Infrastructure and Services - Useable Data
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
The UK is home to a wide variety of different types of data, often with similar data held in different forms which makes bringing them together difficult. This programme will develop tools and approaches to bring that data together in standardised ways so that it is easier to use in health-related research, allowing researchers to work at larger scale and breadth to unlock new opportunities to improve health and wellbeing in the UK, for example through improving how new drugs and other approaches are tested through clinical trials.
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
The Useable Data programme will develop the tools and data engineering capability that enable seamless access to FAIR data, including Phenomics and Prognostic Atlas capabilities (dataset search, classification, and efficient metadata browsing tools described via open dataset catalogues, common data models and data dictionaries), and transforming data, and providing resources for clinical trials. It will focus on alignment of approaches to data and metadata (including phenotypes) with the aim of developing and driving adoption of consistent standards and formats for data and metadata. The work follows a principle of ‘minimal restriction’ rather than mandating a particular standard or platform; increasing interoperability of studies and datasets; and transparency of standards or formats used. It will achieve this through building reuseable, open and extensible software infrastructure through workstreams in ‘Data Standards', ‘Phenomics and Prognostic Atlas’ and ‘Transforming Data for Trials’ which will support research across the data-to-analysis pipeline. With the overarching aim of increased interoperability, this programme will allow research to take place at a wider scale, across a greater breadth of datasets and modalities.
The Useable Data programme will develop the tools and data engineering capability that enable seamless access to FAIR data, including Phenomics and Prognostic Atlas capabilities (dataset search, classification, and efficient metadata browsing tools described via open dataset catalogues, common data models and data dictionaries), and transforming data, and providing resources for clinical trials. It will focus on alignment of approaches to data and metadata (including phenotypes) with the aim of developing and driving adoption of consistent standards and formats for data and metadata. The work follows a principle of ‘minimal restriction’ rather than mandating a particular standard or platform; increasing interoperability of studies and datasets; and transparency of standards or formats used. It will achieve this through building reuseable, open and extensible software infrastructure through workstreams in ‘Data Standards', ‘Phenomics and Prognostic Atlas’ and ‘Transforming Data for Trials’ which will support research across the data-to-analysis pipeline. With the overarching aim of increased interoperability, this programme will allow research to take place at a wider scale, across a greater breadth of datasets and modalities.
Organisations
- Health Data Research UK (Lead Research Organisation)
- UNIVERSITY COLLEGE LONDON (Collaboration)
- UNIVERSITY OF BRISTOL (Collaboration)
- Medicines and Healthcare Regulatory Agency (Collaboration)
- University College London Hospitals NHS Foundation Trust (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- EMBL European Bioinformatics Institute (EMBL - EBI) (Collaboration)
- NHS Digital (Collaboration)
- Unity Health Toronto (Collaboration)
- University of Oxford (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- Barts Health NHS Trust (Collaboration)
- NHS ENGLAND (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- LANCASHIRE TEACHING HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Clinical Data Interchange Standards Consortium (CDISC) (Collaboration)
- Public Health Scotland (Collaboration)
- INTENSIVE CARE NATIONAL AUDIT AND RESEARCH CENTRE (Collaboration)
- Medical Products Agency (Collaboration)
- British Heart Foundation (BHF) (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- Institute of Cancer Research UK (Collaboration)
- University of Dundee (Collaboration)
- Australian Clinical Trials Alliance (Collaboration)
- OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Great Ormond Street Hospital (GOSH) (Collaboration)
- CARDIFF UNIVERSITY (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- Leeds Teaching Hospitals NHS Trust (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
- GlaxoSmithKline (GSK) (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
Publications
Abbasizanjani H
(2023)
Harmonising electronic health records for reproducible research: challenges, solutions and recommendations from a UK-wide COVID-19 research collaboration
in BMC Medical Informatics and Decision Making
Aldridge R
(2024)
Estimating disease burden using national linked electronic health records: a study using an English population-based cohort.
in Wellcome Open Research
Asselbergs F
(2023)
Clinical Applications of Artificial Intelligence in Real-World Data
Au Yeung J
(2023)
Artificial intelligence (AI) for neurologists: do digital neurones dream of electric sheep?
in Practical neurology
Au Yeung J
(2023)
AI chatbots not yet ready for clinical use.
in Frontiers in digital health
Austin-Zimmerman I
(2023)
Genome-wide association studies and cross-population meta-analyses investigating short and long sleep duration.
in Nature communications
Banerjee A
(2023)
Identifying subtypes of heart failure from three electronic health record sources with machine learning: an external, prognostic, and genetic validation study.
in The Lancet. Digital health
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
| Title | Crochet ducks |
| Description | Developed by Macey Murray as a way of promoting relevant research and strongly encouraged by the whole team. The crochet ducks come in three sizes: Miniature (lapel-adorning), hand-sized, and large-fluffy, in three designs, mallard or yellow or white. The pattern was designed and the ducks made by Macey Murray. A duck is awarded to each research team that publishes a data utility comparison study. This is to raise awareness and encourage researchers to conduct such studies, and add to the growing evidence of which health systems datasets can or cannot be used in place of traditional trial-specific data collection. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2023 |
| Impact | Social media promotion of the ducks and data utility comparison studies in Feb 2023 led to over 25k views and engagement from the trials and health data science communities. Since then, the ducks have been used to promote the awareness of these studies at workshops, national meetings, and conferences (including awards given at ICTMC 2024). A picture of some of the ducks was used to promote the episode about healthcare systems data of Trial Talk. This is an ongoing activity, and so far those awarded with ducks include colleagues from Oxford, UCL, Bristol, and Leeds. There has been enthusiasm from the wider trials and health data science communities about use of the duck incentive to increase the evidence-base. |
| Description | Contribution to, citations and recommendations captured in Sudlow Review (2024) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Data standardisation using the OMOP common data model |
| Amount | £86,489 (GBP) |
| Organisation | European Commission |
| Sector | Public |
| Country | Belgium |
| Start | 03/2020 |
| End | 03/2021 |
| Description | Defining & Redefining Disease Using Multimodal Data on a National Scale: the HDR UK Phenomics Resource |
| Amount | £1,087,168 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2020 |
| End | 04/2023 |
| Description | Multimorbidity and clinical guidelines: using epidemiology to quantify the applicability of trial evidence to inform guideline development |
| Amount | £356,667 (GBP) |
| Organisation | Chief Scientist Office |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2018 |
| End | 12/2020 |
| Description | Multimorbidity and clinical guidelines: using epidemiology to quantify the applicability of trial evidence to inform guideline development |
| Amount | £356,667 (GBP) |
| Organisation | Chief Scientist Office |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2019 |
| End | 03/2022 |
| Title | Atlas for Health |
| Description | Disease Atlas is an ambitious project involving the generation of systematic, data-driven knowledge across all common and rare diseases. Using newly available nationwide data on 56 million people the Atlas is generating novel comparative insights of the health needs of patients, the care provided, and the research that is carried out (Figure). We believe that the Disease Atlas may change the way we think about and research diseases, inform policy and practice and unlock new ways to improve the health of patients and communities. The Atlas is based on learning from linked, longitudinal and nationwide data made available to support the COVID-19 pandemic response. A dominant paradigm in health research is to study one disease, or one group of diseases at a time. Moreover diseases which are considered 'rare' are usually researched separately from those considered common. Patients and clinicians recognize two limitations of this paradigm: first it misses out on the experience of people (patients), who commonly have multiple diseases, and may take multiple medications; and second, it is not systematic, and many diseases and populations are relatively neglected in research. The Atlas is still in development |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | still in development |
| URL | https://www.ucl.ac.uk/health-informatics/research/disease-atlas |
| Title | Atlas for Health Database |
| Description | A suite of Disease Atlas assets that we anticipate will be of significant value to clinicians, patients, policymakers and others re being developed. These range from novel results for 6000 diseases, tools, code, visualisations, and a results browser and database. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2024 |
| Provided To Others? | No |
| Impact | Potential to change clinical care and development of guidelines for diseases |
| Title | Data provenance of four NHS Digital (now NHS England) datasets (updated 2023) |
| Description | Data provenance information of four frequently used datasets held by NHS England (formerly NHS Digital) can be accessed through the Central Metastore (the metadata catalogue). The datasets are: Admitted Patient Care, Outpatients and Critical Care of Hospital Episode Statistics, and the Civil Registration of Deaths. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Users of the datasets can request access to the Central Metastore at NHSE to obtain detailed information and data flow diagrams of the four datasets, showing how the data are processed within NHSE. Since April 2023, static data lineage diagrams (as pdf), interactive diagrams via Central Metastore guest access, and an overview of the method to prepare and ingest metadata information into the Central Metastore were updated and made publicly available via the project website hosted by NHSE. |
| URL | https://dedicate.healthandcaremetadata.uk/ |
| Title | Operating manual to import data provenance information into metadata tools. |
| Description | Describes steps for importing data lineage/provenance information into metadata and data mapping tools such as Collibra and Mauro. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Provides guidance to the wider trials and data science communities on how data provenance information can be captured in metadata tools. |
| Title | Database of Phenotype Defintions |
| Description | A web-based platform with an underpinning database of phenotype definitions. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | Researchers and Trusted Research Environments can use the resource for selecting cohorts of relevance for research projects |
| URL | https://phenotypes.healthdatagateway.org/ |
| Title | Demonstrating the Data Integrity of routinely collected healthcare systems data for Clinical Trials (DEDICaTe) |
| Description | Dataset demonstrating the integrity and provenance of selected healthcare systems datasets at NHS England |
| Type Of Material | Database/Collection of data |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | Not yet known |
| URL | https://dedicate.healthandcaremetadata.uk/ |
| Description | ASCEND PLUS trial |
| Organisation | NHS England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | ASCEND PLUS is a streamlined direct-to-participant trial in type 2 diabetes. The trial will recruit 20,000 people within the UK by mailed invitation. Assessment of eligibility, consent and follow up are all conducted online or by telephone with outcomes collected through data linkage for a median of 5 years follow-up. The trial is coordinated by the University of Oxford with diabetes specialists in collaborating NHS Trusts. Collaborating investigators are invited to join an annual meeting to discuss the trial progress and relevant research. The trial is adopted as a pilot for the NHS DigiTrials Recruitment Support service within NHS England. This enables 0.5-1M individuals with diabetes to be invited without disclosure of identifiable data to the University of Oxford without consent. |
| Collaborator Contribution | NHS Trusts: Support for recruitment, research nurse support for running the trial, promoting the trial within each region. NHS England: Invitation of potential participants. |
| Impact | No outputs yet |
| Start Year | 2022 |
| Description | ASCEND PLUS trial |
| Organisation | Oxford University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | ASCEND PLUS is a streamlined direct-to-participant trial in type 2 diabetes. The trial will recruit 20,000 people within the UK by mailed invitation. Assessment of eligibility, consent and follow up are all conducted online or by telephone with outcomes collected through data linkage for a median of 5 years follow-up. The trial is coordinated by the University of Oxford with diabetes specialists in collaborating NHS Trusts. Collaborating investigators are invited to join an annual meeting to discuss the trial progress and relevant research. The trial is adopted as a pilot for the NHS DigiTrials Recruitment Support service within NHS England. This enables 0.5-1M individuals with diabetes to be invited without disclosure of identifiable data to the University of Oxford without consent. |
| Collaborator Contribution | NHS Trusts: Support for recruitment, research nurse support for running the trial, promoting the trial within each region. NHS England: Invitation of potential participants. |
| Impact | No outputs yet |
| Start Year | 2022 |
| Description | Advising ICNARC on data provenance, integrity and utility assessments |
| Organisation | Intensive Care National Audit and Research Centre |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | MLM advising on methodology to assess utility and integrity of ICNARC data, and to increase transparency on data provenance and management. |
| Collaborator Contribution | Sharing best practice and learning about data provenance and utility to support clinical trials using ICNARC data. Also regular attendance at TDfT Stakeholder Prioritisation Forum meetings (3 times/year) and contributor to the Forum's Working Group. |
| Impact | None yet. |
| Start Year | 2024 |
| Description | Advising NNRD on data provenance and integrity assessments |
| Organisation | Imperial College London |
| Department | Neonatal Data Analysis Unit |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MLM advising on data provenance and integrity assessments. |
| Collaborator Contribution | Seeking advice on how to document data provenance and integrity of NNRD. |
| Impact | None yet. |
| Start Year | 2023 |
| Description | Advising on development of MSc module on data-enabled trials |
| Organisation | University of Edinburgh |
| Department | Usher Institute |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MLM provided advice on the development of MSc module on data-enabled trials (14th Jan 2025), along with members of the TDfT team - FLW (Cardiff), RT (Cardiff), AR (Dundee). |
| Collaborator Contribution | Developed learning outcomes, assessments and curriculum based on advice from contributors. |
| Impact | None yet. |
| Start Year | 2024 |
| Description | British Heart Foundation-HDR UK National Cardiovascular Data Science Centre |
| Organisation | British Heart Foundation (BHF) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | As member of Scientific Steering Group gave invited talk at workshop (phenomics) and advised on priorities |
| Collaborator Contribution | £10M |
| Impact | Academic, research and clinical outputs |
| Start Year | 2019 |
| Description | CDISC collaboration with the HDR UK clinical trials programme |
| Organisation | Clinical Data Interchange Standards Consortium (CDISC) |
| Country | United States |
| Sector | Charity/Non Profit |
| PI Contribution | Experience from across the HDR UK clinical trials community contributing to the with the CDISC international group through Real World Data expert advisory board membership and other mechanisms. |
| Collaborator Contribution | CDISC have agreed to work in partnership with the HDR UK Clinical Trials Programme in order to develop standards, resources and training to enable clinical trials teams to integrate healthcare systems data into clinical trials in a way which meets regulatory requirements and is interoperable and reusable. |
| Impact | (none to date) |
| Start Year | 2021 |
| Description | CPRD data integrity collaboration |
| Organisation | Medicines and Healthcare Regulatory Agency |
| Department | Clinical Practice Research Datalink (CPRD) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Macey Murray has given guidance to CPRD on documenting data provenance and integrity in 2022, and a research assistant will begin a secondment at CPRD in March 2024 to support this work. |
| Collaborator Contribution | Provision of secondment opportunity and access to detailed data lineage/metadata of CPRD data products. There will be some supervision of the research assistant at the start of the secondment to familiarise them with CPRD systems. |
| Impact | No current outputs. Kick-off meeting with CPRD on 9th Sep 2022 to define remit of CPRD data integrity project. The seconded RA will progress this work over the next few months. |
| Start Year | 2022 |
| Description | Collaboration with the Australian Clinical Trials Alliance |
| Organisation | Australian Clinical Trials Alliance |
| Country | Australia |
| PI Contribution | Sharing best practice and learning around issues of data access, utility, and integrity. |
| Collaborator Contribution | Sharing best practice and learning around issues of data access, utility, and integrity. |
| Impact | Collaboration & facilitating future research |
| Start Year | 2024 |
| Description | Data Utility Comparisons in STAMPEDE (DUCkS) |
| Organisation | Institute of Cancer Research UK |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MRC CTU leading project |
| Collaborator Contribution | NHS Digital supplying data ICR providing clinical guidance |
| Impact | Pending |
| Start Year | 2022 |
| Description | Data Utility Comparisons in STAMPEDE (DUCkS) |
| Organisation | NHS Digital |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | MRC CTU leading project |
| Collaborator Contribution | NHS Digital supplying data ICR providing clinical guidance |
| Impact | Pending |
| Start Year | 2022 |
| Description | EPCC |
| Organisation | University of Edinburgh |
| Department | Edinburgh Parallel Computing Centre (EPCC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK Data Standards and Gateway Teams are collaborating to manage a project to map Scottish National Data sets to OMOP and onboard them to Cohort Discovery |
| Collaborator Contribution | Hosting of data and technical support |
| Impact | First data sets available on Cohort Discovery: NRS Deaths and SMR04 |
| Start Year | 2023 |
| Description | GlaxoSmithKline / UCL Phenomics Hub |
| Organisation | GlaxoSmithKline (GSK) |
| Country | Global |
| Sector | Private |
| PI Contribution | Denaxas leads this high profile £1.9M GlaxoSmithKline (GSK) collaboration, considered a "flagship" for engagement by UCL. |
| Collaborator Contribution | Our collaboration centres on the current and future planning of 'state of the art' and 'next level' reproducible phenotypes of use by GSK. The collaboration is one of the largest industry-sponsored collaborations within UCL Population Health Sciences and was considered a "flagship" for engagement. |
| Impact | Papers in preparation. |
| Start Year | 2023 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | EMBL European Bioinformatics Institute (EMBL - EBI) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | HDR UK Phenotype Portal - UK wide project |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | New collaboration between HDR UK groups across the UK to develop a Phenotype portal. Workstream lead for the web portal. |
| Collaborator Contribution | The collaborators bring their expertise in phenotypes and data science to a pan UK project |
| Impact | A collaborative grant to HDR UK which was funded |
| Start Year | 2019 |
| Description | Health Informatics Centre, University of Dundee |
| Organisation | University of Dundee |
| Department | Health Informatics Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK Data Standards and Gateway Teams are collaborating to manage a project to map Scottish National Data sets to OMOP and onboard them to Cohort Discovery |
| Collaborator Contribution | Mapping and transformation of data |
| Impact | First data sets available on Cohort Discovery: NRS Deaths and SMR04 |
| Start Year | 2023 |
| Description | Healthcare systems data for clinical trials: data integrity |
| Organisation | NHS Digital |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Leadership of project and coordination |
| Collaborator Contribution | Discussion, data, engagement |
| Impact | Report: https://zenodo.org/record/6047155#.YiXW1fnP2Uk Paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296098/pdf/main.pdf Subsequent funding: DEDICATE project |
| Start Year | 2021 |
| Description | Healthcare systems data for clinical trials: data integrity |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leadership of project and coordination |
| Collaborator Contribution | Discussion, data, engagement |
| Impact | Report: https://zenodo.org/record/6047155#.YiXW1fnP2Uk Paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296098/pdf/main.pdf Subsequent funding: DEDICATE project |
| Start Year | 2021 |
| Description | Healthcare systems data for clinical trials: data integrity |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Leadership of project and coordination |
| Collaborator Contribution | Discussion, data, engagement |
| Impact | Report: https://zenodo.org/record/6047155#.YiXW1fnP2Uk Paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296098/pdf/main.pdf Subsequent funding: DEDICATE project |
| Start Year | 2021 |
| Description | MRC-NIHR Trials Methodology Research Partnership's Outcomes Working Group |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Macey Murray is a member of the Outcomes Working Group with the aim to align the use of routine health data with core trial outcomes. |
| Collaborator Contribution | About 40 universities are involved with the Working Group. Sharing best practice for developing core outcome sets and other outcomes based work such as greener trials. |
| Impact | None currently. |
| Start Year | 2023 |
| Description | MRC-NIHR Trials Methodology Research Partnership's Outcomes Working Group |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Macey Murray is a member of the Outcomes Working Group with the aim to align the use of routine health data with core trial outcomes. |
| Collaborator Contribution | About 40 universities are involved with the Working Group. Sharing best practice for developing core outcome sets and other outcomes based work such as greener trials. |
| Impact | None currently. |
| Start Year | 2023 |
| Description | MRC-NIHR Trials Methodology Research Partnership's Outcomes Working Group |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Macey Murray is a member of the Outcomes Working Group with the aim to align the use of routine health data with core trial outcomes. |
| Collaborator Contribution | About 40 universities are involved with the Working Group. Sharing best practice for developing core outcome sets and other outcomes based work such as greener trials. |
| Impact | None currently. |
| Start Year | 2023 |
| Description | Member of TIPTOE Trial Steering Committee |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MLM provides advice as a member of the Trial Steering Committee (oversight) for TIPTOE. |
| Collaborator Contribution | TIPTOE trial team asks for advice on key decisions affecting the conduct of the trial, such as extensions to recruitment, justifications to protocol changes, and use of health data. |
| Impact | None yet. Trial is still recruiting. |
| Start Year | 2024 |
| Description | Membership of CPRD Data Quality Advisory Group |
| Organisation | Medicines and Healthcare Regulatory Agency |
| Department | General Practice Research Database (GPRD) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MLM advising on data quality issues to the internal CPRD Data Quality Working Group. |
| Collaborator Contribution | Improvement of CPRD data quality, including transparency around how data are managed (provenance), ensuring integrity and relevance. |
| Impact | None yet. |
| Start Year | 2024 |
| Description | Mentor for an early career researcher (statistician with research interests in healthcare systems data) |
| Organisation | Imperial College London |
| Department | Imperial Clinical Trials Unit (ICTU) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Macey Murray has been a mentor for an early career researcher (ECR) since July 2023; the ECR has since successfully obtained a PhD studentship on decentralized trials, starting March 2024. |
| Collaborator Contribution | Development of data utility comparison studies using neonatal data. |
| Impact | No current outputs. |
| Start Year | 2023 |
| Description | NHS Secure Data Environment (SDE) Network Partnership |
| Organisation | NHS England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Collaboration with the https://digital.nhs.uk/data-and-information/research-powered-by-data/sde-network to provide software to support their network. Regular meetings to collaborate with them |
| Collaborator Contribution | Attendance at regular meetings. Shared communications and events to promote the software and partnership. |
| Impact | Input in to SDE Network policy documents Reduction in complexity for researchers working across the UK - streamlining and standardising processes |
| Start Year | 2023 |
| Description | Partner advising on data provenance and integrity programme in Canadian VITAL data infrastructure platform |
| Organisation | Unity Health Toronto |
| Country | Canada |
| Sector | Hospitals |
| PI Contribution | MLM and MS provided initial advice on the development of Program 1 for the VITAL platform (VaccInes and Therapeutics AcceLerator) - a data infrastructure for evaluating vaccines and therapeutics, submitted for funding to the Canada Biomedical Research Fund in Sep 2023. This program plans to establish the accuracy of critical health measures and outcomes from VITAL's routinely collected health data to support rapid decision-making and regulatory approval. This includes using the data provenance and integrity framework developed to describe the lineage of NHS Digital (now England) datasets. |
| Collaborator Contribution | They brought together the research team and partners to develop the full data science funding application. |
| Impact | No current outputs; funding application initially submitted Sep 2023, then pan-Canadian revision submitted in Feb 2025. |
| Start Year | 2022 |
| Description | Partnership between HDR UK and the MRC-NIHR Trials Methodology Research Partnership |
| Organisation | Medical Research Council (MRC) |
| Department | MRC/NIHR Methodology Research Programme |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | MRS (UCL, MLM since Jun 2025) and MM (Oxford) provide advice on strategy as members of the TMRP executive committee. MLM and MM are members of the Health Informatics Working Group. MLM is a member of the Outcomes Working Group. |
| Collaborator Contribution | Receptive to advice on TMRP strategy and how the HDR UK programme can work with and alongside existing Working Groups. Development of research projects within the HIWG. |
| Impact | Joint trial methodology webinar series hosted by UKTMN since 2020. |
| Start Year | 2020 |
| Description | Partnership between HDR UK and the MRC-NIHR Trials Methodology Research Partnership |
| Organisation | University of Liverpool |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | MRS (UCL, MLM since Jun 2025) and MM (Oxford) provide advice on strategy as members of the TMRP executive committee. MLM and MM are members of the Health Informatics Working Group. MLM is a member of the Outcomes Working Group. |
| Collaborator Contribution | Receptive to advice on TMRP strategy and how the HDR UK programme can work with and alongside existing Working Groups. Development of research projects within the HIWG. |
| Impact | Joint trial methodology webinar series hosted by UKTMN since 2020. |
| Start Year | 2020 |
| Description | PhD studentship: language used in participant-facing documents to explain linkage and use of healthcare systems data |
| Organisation | University of Bristol |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Developed PhD proposal, and primary (MLM) and subsidiary supervision (SL, MS). |
| Collaborator Contribution | One subsidiary supervisor is from Bristol (Emma Turner). |
| Impact | Poster presentation at the International Clinical Trials Methodology Conference 2024 (Engagement activity). Accepted abstract for presentation at the Society for Clinical Trials Conference 2025. |
| Start Year | 2023 |
| Description | Public Health Scotland |
| Organisation | Public Health Scotland |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK Data Standards and Gateway Teams are collaborating to manage a project to map Scottish National Data sets to OMOP and onboard them to Cohort Discovery |
| Collaborator Contribution | Provision of data sets and technical support |
| Impact | First data sets available on Cohort Discovery: NRS Deaths and SMR04 |
| Start Year | 2023 |
| Description | Real World Evidence Network Coordinating Centre - NDORMS |
| Organisation | University of Oxford |
| Department | Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Diseases (NDORMS) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | The coordinating centre leads the scientific and technical aspects of the network, including writing study protocols, writing onboarding and study code, and coordinating the technical work of the data partners, including analysis and dissemination of study results. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - Barts (QMUL) |
| Organisation | Barts Health NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - CPRD (MHRA) |
| Organisation | Medicines and Healthcare Regulatory Agency |
| Department | Clinical Practice Research Datalink (CPRD) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - GOSH |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - Lancashire Teaching Hospitals |
| Organisation | Lancashire Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - Leeds Teaching Hospitals |
| Organisation | Leeds Teaching Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | Real World Evidence Network Data Partner - University College London Hospital |
| Organisation | University College London Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK Data Standards team is project managing and funding the Real World Evidence network. Its aim is to demonstrate the potential of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) as an enabler of efficient cross-nation research studies. |
| Collaborator Contribution | Data partners contribute their OMOP data sets to the network. They run data characterisation and study code on their data sets, returning the anonymised and aggregated results to the coordinators and contributing to data analysis and dissemination activities. |
| Impact | Completion of the first studies is scheduled for June 2025 and conference presentations and manuscripts are expected to follow. |
| Start Year | 2024 |
| Description | UK-Sweden Life Sciences Collaboration: Joint workshop on DCT in Clinical Trials |
| Organisation | Medical Products Agency |
| Country | Sweden |
| Sector | Public |
| PI Contribution | Matt Sydes and Marion Mafham, as HDR UK program leads, are working with the Office for Life Sciences and the Medical Products Agency Sweden to organise a joint workshop on decentralised clinical trials aiming to foster research collaboration and innovation, share experience and expertise and facilitate scientific collaborations. The use of healthcare systems data in clinical trials will be a key focus of the workshop. |
| Collaborator Contribution | Coordination and content developement. |
| Impact | Outputs pending |
| Start Year | 2024 |
| Description | User centred research for NHS Digital/England's Data Access Programme |
| Organisation | NHS Digital |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Macey Murray participated in the user-centred research around the redesign of the DARS online application system. This involved approx. 8 interactive sessions since July 2021 to Dec 2023. The revised DARS online system was launched in Jan 2024. |
| Collaborator Contribution | They initiated the Data Access Programme and approached MLM to participate in the development of the new DARS online. |
| Impact | Revised DARS online system, launched in Jan 2024. |
| Start Year | 2021 |
| Title | Phenotype Library (2024) |
| Description | A new, enhanced version of the Phenotype Library. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2024 |
| Open Source License? | Yes |
| Impact | A Reference Catalogue of Human Diseases Connected. The Phenotype Library is accessible via an API to support interoperability, is integrated with health dataset information in HDR-UK's Innovation Gateway, and hosts content from numerous contributing organisations. Patient-focused. The Library is enabling important research to improve patient health and well-being. Content spans major disease areas, including heart disease, cancer, COVID-19 and other common and rare human health conditions. Curated collections from contributors such as the HDR UK BREATHE Hub for respiratory health share clinical expertise to tackle critical research questions. Cutting-edge. Built with a focus on computability, this resource aims to drive the next generation of research methods. Integration with Phenoflow enables executable implementations of the phenotypes in our collection, while the API and R package client facilitate integration of the Library content directly into other analysis workflows. |
| URL | https://phenotypes.healthdatagateway.org/ |
| Title | Revised DARS online system |
| Description | Redesign of the DARS online system which allows data users to apply for data access and manage data sharing agreements and contracts. MLM has given extensive user input to NHS England's Data Access Programme (which includes this redesign) and gave feedback on the beta-version before release in January 2024. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2024 |
| Impact | Facilitating future research by reducing complications in data access applications. |
| URL | https://dataaccessrequest.hscic.gov.uk/ |
| Description | 11th IEEE International Conference on Health Informatics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation provided at conference. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ieeeichi.github.io/ICHI2023/ |
| Description | 1st OMOP special interest group meeting - June 23 |
| 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 | The Alliance is undertaking a number of activities to support the adoption of data standards in the UK health data ecosystem. In particular, we are focusing on the Observational Medical Outcome Partnership (OMOP) Common Data Model (CDM) developed by the Observational Health Data Sciences and Informatics (OHDSI) consortium. The aim of this inaugural meeting is to start a national collaboration to bring together data users communities, to form a strong link to EDHEN Consortium and OHDSI UK Node, working in partnership to support OMOP adoption. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/projects/data-standards-and-quality/ |
| Description | BIA TechBio Conference |
| 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 | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited expert panel speaker at the BIA TechBio Conference. Talk and panel theme: The state of TechBio in the UK. The aim and purpose was to cover a broad set of crucial themes relating to strengths, opportunities and challenges to the sector. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.bioindustry.org/policy/strategic-technologies/techbio.html |
| Description | Blog: Centre for Trials Research At #ICTMC2024: 7th International Clinical Trials Methodology Conference (ICTMC) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Blog: Centre for Trials Research At #ICTMC2024: 7th International Clinical Trials Methodology Conference (ICTMC) |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://blogs.cardiff.ac.uk/centre-for-trials-research/centre-for-trials-research-at-ictmc2024-7th-i... |
| Description | Blog: Insights from the HDR UK Wales Driver Programme PPIE Event |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Demonstrates wider impact of the training work-package across Wales and a continued conversation with the public about trial methods and data enabled trials thus building and maintaining trust. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://popdatasci.swan.ac.uk/insights-from-the-hdr-uk-wales-driver-programme-ppie-event/ |
| Description | Blog: Tracing NHS data back to the source |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Blog post from MRS about the DEDICaTe project (data integrity of 4 NHS datasets in a central metadata catalogue), promoting publication of the article about the work in the Health Informatics Journal. Supports trust and transparency of NHSE datasets, and promotes expansion of the work to other NHSE data. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://digital.nhs.uk/blog/data-points-blog/2024/tracing-nhs-data-back-to-the-source |
| Description | Building (inter)national phenotype libraries, American Medical Informatics Association Annual Symposium, Nov 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Panel session led by Curcin, Wiley, Chapman, Denaxas, Weiner at AMIA 2023 conference, New Orleans which sparked questions and discussion about the development and use of Phenotype Libraries. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://s4.goeshow.com/amia/annual/2023/schedule_at_a_glance.cfm |
| Description | Call for funding to establish a Real-World Evidence Network Co-ordination Centre for the UK |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To promote a funding call |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/call-for-funding-to-establish-a-real-world-evidence-network-co-ordinati... |
| Description | Centre for Trials Research Celebrating Partnership Event |
| 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 | A narrative history or development, present state and horizon scanning of routine data use in trials and other well designed studies. The role of different contributors (researchers, the public) in designing and delivering routine data studies and with present focus on training. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Clinical Trials Stakeholder Prioritisation Forum (convenes 3 times/year) |
| 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 | Forum of funders, trialists, data providers, patients and the public, to discuss issues around the use of health data in clinical trials. Chaired by Macey Murray and Marion Mafham (Aug 2024 onwards). |
| Year(s) Of Engagement Activity | 2023,2024,2025 |
| URL | https://ukhealthdata.org/data-standards/data-enabled-clinical-trials/ |
| Description | Clinical Trials Stakeholder Prioritisation Forum Initial Meeting - Dec 23 |
| 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 | This working group aims to facilitate an exchange of ideas between data providers, consumers of trial results and the wider trials community, covering how challenges can be addressed and to prioritise the necessary actions to realise the potential benefits. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Clinical Trials Stakeholder Prioritisation Forum, 5th December 2023 |
| 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 | Clinical Trials Stakeholder Prioritisation Forum, 5th December 2023, 53 participants, primarily Alliance members, Chairs: Matt Sydes and Marion Mafham |
| Year(s) Of Engagement Activity | 2023 |
| Description | Clinical trials input for Sudlow Review (consent, access, provenance, integrity and utility issues). |
| 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 | MLM, MRS, and SBL had an interview with Prof Sudlow and colleagues to discuss health data issues specific to clinical trials - consent, access, provenance and integrity of data, and utility (or clinical relevance). Citations in the Sudlow Review of our data provenance and utility publications have raised awareness to a wider audience. |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | Co-supervision of an MSc project assessing participant recruitment screening strategies using Clinical Practice Research Datalink (SPRINT: Speedy Patient Recruitment INto Trials) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Develop framework to improve screening of CPRD for recruitment |
| Year(s) Of Engagement Activity | 2024 |
| Description | Created Public Advisory Group |
| 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 | The HDR UK Transforming Data for Trials Public Advisory Group has been established to ensure patient and public involvement in the activities of the programme. The group is jointly managed by Oxford and Cardiff with input from other organisations as appropriate. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Directory of UK OMOP Data Sets |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is a web page displaying a resource signposting data sets |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://ukhealthdata.org/data-standards/directory-of-omop-data-sets-in-the-uk/ |
| Description | Driver & IS Scientific 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 | To increase integration across Drivers and infrastructure, identify and maximise opportunities for collaboration and leverage funding opportunities. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.eventbrite.co.uk/e/driver-and-infrastructure-programmes-scientific-and-integration-meeti... |
| Description | ELIXIR Bioinformatics Industry Forum |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker at ELIXIR Bioinformatics Industry Forum: Trusted research environments for sharing data in life sciences. Presentation: Examples of partnership models to tackle the big challenges and seize big opportunities in TREs. The purpose was to overcome fragmentation and promote collaboration among different stakeholders. |
| Year(s) Of Engagement Activity | 2023 |
| Description | ELIXIR Human Data Communities Event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on HDR and Gateway |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://docs.google.com/document/d/1lF7wiSKzvJrFsfEJ6NAtZNlpDd6Vqjc-UCcEYZcEX2E/edit?tab=t.0#heading... |
| Description | EMBL's new Human Ecosystems Programme |
| 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 | Talks and training around the exposome, understanding ethical and legal considerations for using human data, and using synthetic data, including training on using the EGA resource. Specifically a Q&A on the topic of "Accessing health data and real world implementation of health data management". |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.embl.org/about/info/human-ecosystems/ |
| Description | Enabling GP Data for Research and Patient Outcomes |
| 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 | This Department of Health and Social Care workshop on Enabling GP Data for Research and Patient Outcomes brought together key stakeholders to identify and prioritise actions to support the use of GP data for consented cohorts. |
| Year(s) Of Engagement Activity | 2024 |
| Description | European OHDSI Symposium 2023 |
| 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 | Conference organised by OHDSI Europe, devoted to the OMOP Common Data Model. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.ohdsi.org/2023europesymposium/ |
| Description | Expert speakers and oversight committee membership |
| 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 | Expert speakers (FLW, MR) and oversight committee (MR) for a public dialogue informing Wales Government policy on potential changes to the COPI regulations and Research Matters: Health and Care Research Wales Plan. These activities form a key part of the Research Matters: Health and Care Research Wales Plan and complement wider Welsh Government data ambitions, particularly the better use of health and care data via A Healthier Wales commitment for the creation of National Data Resource and Digital Strategy for Wales Mission 6 - champion greater use of data linking and enhance data science capability in the public sector to transform how our information is used for public benefit. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Fed A Technical Roadmap Workshop |
| 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 | Regular meeting - |
| Year(s) Of Engagement Activity | 2024 |
| Description | Future of clinical trials: R&D managers conference |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Membership of panel discussion for 60 minutes on "future of clinical trials" at NHS R&D managers annual forum. Panel includes Matt Sydes (UCL, HDRUK) and Marion Mafham (Oxford, HDRUK) |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.ukrdleaders.org/ukrd-summit/ |
| Description | HDR Gateway Landing Page design review (researchers) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | A series of 3 workshops were run throughout late October and early November with the focus being on presenting possible Gateway landing pages to researchers. The output of this meeting was that researchers would feedback on these design, how they found the user interface with the goal being that this feedback would be used to improve the user experience and user journey on the Gateway. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR London - Presentationto HDRUK Board |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Presentation to HDR UK Board on 26 Sept 2024 on high cost drugs (Langan), retinal imaging analyses (Keane), Atlas for Health (Hemingway) and Foresight (Tomlinson) Generative AI approaches at nationwide scale and Atlas for Health Foresight is a general-purpose model for biomedical concept modelling that can be used for real-world risk forecasting, virtual trials, and clinical research to study the progression of disorders, to simulate interventions and counterfactuals, and for educational purposes. Atlas for Health seeks to leave no person and no disease behind. It offers a comprehensive approach to learning how to improve our nation's health. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Technology Ecosystem Conference (14 Nov 2023, Mnachester) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To bring together all the groups and people developing software funded by/branded as HDR UK to share knowledge and develop a plan to support the underlying technical work. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/hdr-uk-technology-ecosystem-autumn-workshop-tickets-743465674847?aff=... |
| Description | HDR UK Technology Team Metasprint (1) - April 2023, Nottingham |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Nottingham University to discuss means of integrating the Tissue DIrectory Coorindation Centre (TDCC) metadata into the Gateway as well as an overview of the TRE-FX project, which is aiming to streamline how analysis tools access multiple TREs. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (2) - May 2023, Manchester |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Manchester University to discuss resources and solutions being developed from: - the Software Sustainability Institute (SSI), - NERC Digital Solutions - NHS FT Clinical Data Science Unit |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (3) - July 2023, Leeds |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from Leeds University to discuss the Useable data - data standards workstream, Yorkshire & Humber Secure Data Environment SDE requirements and HDR UK North updates. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (4) - August 2023, Virtual |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | DR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (5) - October 2023, Virtual |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Technology Team Metasprint (6) - November 2023, Bristol |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Metasprints are held every 7 weeks to review the Gateway roadmap and plans for future sprints with stakeholders. At each metasprint, we meet with colleagues from partner organisations to discuss opportunities for further collaboration on technical projects. At this metasprint, we met with colleagues from UWE to discuss the SACRO project, the Southern Consortium and South West SDE. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Transforming Data for Trials drop-in session |
| 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 | Engagement with wider trials community, raising awareness of the programme and of HDR UK and Alliance activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Transforming Data for Trials drop-in session |
| 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 Stand: HDR UK Transforming Data for Trials drop-in session (opportunity to meet the progamme leads). Engagement with wider trials community, raising awareness of the programme and of HDR UK and Alliance activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK evening reception at the House of Lords hosted by Lord James O'Shaughnessy |
| 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 | Evening reception (20 Sep 2023) to celebrate the impact of HDR UK's first 5 years included a stand for "Health data scientists of our future" to highlight early career researchers (including fellows) and diverse career paths. Macey Murray was invited to attend as part of the stand and to network with guests. Guests were from a range of organisations, including Department of Health & Social Care, MHRA, distinguished guests including the Chief Medical/Scientific Officers from the Four Nations, and industry stakeholders. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDRUK Cambridge Executive Committee |
| 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 | Collaboration across partners. Sharing understanding of different streams of work and making plans to work together. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HPC-AI Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker at the 5th Annual HPC-AI Advisory Council UK Conference. Presentation: TREs at Scale. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hpcwire.com/off-the-wire/5th-annual-hpc-ai-advisory-council-uk-conference-set-for-octobe... |
| Description | HealTac Hackathon (NLP & Search) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | A hackathon was organised with UCL and the University of Manchester to run a focused exercise looking at how the Gateway could leverage different search technologies and NLP analysis to improve the search capabilities of the Gateway. The output of this was a series of options and demonstrated solutions that could be evaluated as possible search solutions, and NLP solutions to enhance data on the Gateway |
| Year(s) Of Engagement Activity | 2023 |
| Description | HealTac NLP workshop |
| 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 | An engagement workshops with Manchester University and UCL about how we can display Tools as a resource in the Gateway and how we can categorise them in a more logical manner to make them more discoverable |
| Year(s) Of Engagement Activity | 2023 |
| Description | Health data meta-data website (DEDICATE) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Health data meta-data website (DEDICATE) funded by HDRUK. Supporting integrity and provenance for use of routine data in clinical trials. Improving research culture and capacity |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://dedicate.healthandcaremetadata.uk/ |
| Description | How can clinical trials make the most of healthcare systems data? |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Raising role of healthcare systems data for clinical trials and the challenges; improving research culture and capacity and facilitating future research |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.mrcctu.ucl.ac.uk/news/news-stories/2023/june/new-podcast-episode-how-can-clinical-trials... |
| Description | Information session for API/FMA integration testing (datasets) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | This was a presentation led by the team which highlighted the new API and FMA features that have been developed on the Gateway. These features were released as "beta" releases, with the purpose of this meeting was to demonstrate the features to users and then provide them with credentials to try the features out and provide feedback so we can improve the solution as a whole |
| Year(s) Of Engagement Activity | 2024 |
| Description | Infrastructure & Services Progress Working Session |
| 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 | Discussions around delivering a sustainable technology ecosystem and Gateway developments. |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Large-scale UK recruitment to a cardiovascular outcomes trial using national healthcare systems data |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | HDR UK Stand: DUCkS award ceremony (presentation to those with a DUCkS methodology presentation) |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Data utility comparison studies (DUCkS) of adjuvant chemotherapy & radiotherapy treatments in the STAMPEDE trial |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Workshop: Workshop: Can Healthcare Systems Data be relied upon for measuring clinical trial outcomes? An updated perspective |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Talk: Spotlight Session 8: Decentralised Trials: Multi-disciplinary View of Recent Advances and Remaining Challenges |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Utility of outcomes ascertained from healthcare systems data compared with those ascertained from local research staff in the RECOVERY trial |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Getting our ducks in a row: the need for data utility comparisons of healthcare systems data for clinical trials |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Comparison of baseline characteristics and outcomes of 15,480 ASCEND trial participants versus a matched population of 92,612 people with diabetes and no prior cardiovascular disease |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: BHF Data Science Centre: Systematic review of cardiovascular clinical trial outcome measures (OM) using large language models as a novel methodology |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: Comparison of baseline characteristics and outcomes of 15,480 ASCEND trial participants versus a matched population of 92,612 people with diabetes and no prior cardiovascular disease |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Workshop: Can Healthcare Systems Data be relied upon for measuring clinical trial outcomes? An updated perspective |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: BHF Data Science Centre: Standardising Clinical Outcome measures in Routinely-collected Electronic healthcare systems data (SCORE-CVD) - Myocardial Infarction |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: The RECOVERY Trial in the UK: An overview of data collection processes |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Clinical Trials Methodology Conference 2024 |
| 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 | Poster session: CrossWord: Consent to access and use routine healthcare systems data for randomised clinical trials - a review of current language in participant-facing materials. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Introductory meeting: TDfT Community Insight Group (TCIG) introductory meeting |
| 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 | Introductory meeting: TDfT Community Insight Group (TCIG) introductory meeting |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited Keynote Speaker: Research Software Engineer conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited Keynote Speaker - Research Software Engineer (RSE) Conference, 4 and 5th September 2023, to promote the Disease Atlas and Phenotype Library |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://rsecon23.society-rse.org/ |
| Description | Invited Lecture: New York Cardiovascular Symposium (American College of Cardiology) "Diabetic-Modifying Agents in Evolution: from Metformin to SGLT2 Inhibitors, GLP1 Receptor Agonists and beyond" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture on 8th December 2023 showcasing the use of healthcare systems data in the effective evaluation of diabetes medications in large scale randomised trials. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.acc.org/Education-and-Meetings/Meetings/Meeting-Items/2023/07/01/03/2023-New-York-Cardio... |
| Description | Invited Speaker- HPC-AI Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited Speaker- HPC-AI Conference: The UK's progress towards enabling secure, researcher access to sensitive health data at a UK population scale (19 Oct 2023) |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hpcadvisorycouncil.com/events/2023/uk-conference/agenda.php |
| Description | Invited lecture: International Diabetes Federation, Congress (online) "Going the extra mile in primary prevention: the role of newer drugs" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture 5 December 2023 demonstrating the value of healthcare systems data in diabetes trials. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://idf2023.org/programme/ |
| Description | Invited speaker at the Festival of Genomics 2024 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We presented our modular and extendable phenotyping framework to extract health records from multiple sources, validate phenotypes using 5 layers of analyses, and the results of the implementation in the UK Biobank using 313 disease phenotypes. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://festivalofgenomics.com/london/en/page/home |
| Description | Invited speaker at the Festival of Genomics 2024: Defining Physical and Mental Health Diseases at Scale in Electronic Health Records (24 Jan 2024) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | We presented our modular and extendable phenotyping framework to extract health records from multiple sources, validate phenotypes using 5 layers of analyses, and the results of the implementation in the UK Biobank using 313 disease phenotypes. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://festivalofgenomics.com/london/en/page/home |
| Description | Invited speaker: 4th KCE Trials Symposium - Hot topics and methods in publicly funded clinical trials |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Invited keynote lecture at this symposium 24 May 2023. Aimed to share showcase potential benefits and share best practice for clinical trials with the KCE, policy makers and researchers in Belgium. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://kce.fgov.be/en/kce-trials/news-and-upcoming-events/202302-4th-kce-trials-symposium-hot-topic... |
| Description | Invited speaker: Technology Ecosystem - Launch. Technology Ecosystem Conference/Workshop. Birmingham. 6th Feb 2023 |
| 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 | Technology Ecosystem Conference (6th February 2023) brought together different technology groups from across the community to strengthen relationships and generate ideas to deliver trustworthy infrastructure and services across the health data research ecosystem |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited speaker: The Gateway: A single front door to the SDE Network. NHS SDE Network Conference. Oxford. 15/09/23 |
| 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 | Presentation on the Health Data Research Gateway with the NHS Research Secure Data Environments : outlining key features and services and opportunities to evolve the platform as the single front door for the network. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited talk at the Caribbean Institute for Health Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Potential collaborations and initial discussions on developing a framework to use of ICD-10 coded data in hospitals with international partners |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://uwi.edu/caihr/ |
| Description | Invited talk: Cancer Research UK Data-driven cancer conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | This invited talk at the inaugural data-driven cancer research conference, aimed to demonstrate the lessons learnt from the use of healthcare data in cardiovascular, diabetes and covid-19 trials and to share lessons learnt with the cancer research comminity. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.cancerresearchuk.org/funding-for-researchers/research-events-and-conferences/data-driven... |
| Description | Invited talk: Cardiovascular Round Table of the European Society of Cardiology, on the topic of "The Future of Clinical Trials: Towards Diversity and Inclusion |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This Cardiovascular Round Table of the European Society of Cardiology, on the topic "The Future of Clinical Trials: Towards Diversity and Inclusion, included 2 days of talks and discussion aiming to increase diversity and inclusion in trials. This invited talk considered the role of healthcare data in meeting this aim. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Invited talk: Healthcare Systems Data and motor neurone disease research |
| 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 | This invited talk aimed to present the oportunities and challenges for using healthcare systems data in clinical trials with a particular focus on motor neurone disease. This enabled dissemination of best practice and setting expectations for what can be achieved. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Japan Association for Medical Informatics Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was a keynote speaker at the 43rd Joint Conference on Medical Informatics. Presentation: The UK's progress towards enabling secure, researcher access to sensitive health data at a UK population scale. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://confit-atlas-jp.translate.goog/guide/event/jcmi2023/session/3A11-13/detail?_x_tr_sl=ja&_x_tr... |
| Description | Keynote speaker: Towards Federated Analytics for Population Data. Precision Medicine & Real-World Data Conference - Singapore, 23/05/23 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Key note speaker, presented on experiences enabling a new UK infrastructure for finding and accessing population-wide data for research and public health analysis |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://info.bcplatforms.com/precision-medicine-and-rwd-conference-singapore-2023 |
| Description | Macey Murray: presentation of the Trials programme at the Heart and Lung Institute, Cambridge |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Engagement with wider research community, raising awareness of the programme and of HDR UK and Alliance activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Meeting on Healthcare Systems Data for clinical trials |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion of HSD use in UK trials and future considerations for Australian clinical trials as they begin to use HSD. |
| Year(s) Of Engagement Activity | 2024 |
| URL | http://www.phrn.org.au |
| Description | Member of Clinical Trial Steering Committee (oversight) |
| 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 | MLM member of TIPTOE trial's Steering Committee, providing advice on health data and general trial conduct issues. |
| Year(s) Of Engagement Activity | 2024,2025 |
| Description | Member of Scientific Committee of the International Clinical Trials Methodology Conference 2024 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | MLM was a member of the Scientific Committee that devised the scientific programme of the conference, selecting key note speakers, peer-reviewed submitted abstracts, chaired conference sessions, and judged presented work for awards. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | http://www.ictmc.org |
| Description | Metadata Management Page Review |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | The focus of this workshop session was to engage with custodian partners who would be adding data into and using the Gateway solution to better understand their requirements for a metadata management platform. The output of this meeting was to obtain requirements and insights into useful features that could be developed on the Innovation Gateway |
| Year(s) Of Engagement Activity | 2023 |
| Description | NHS Research SDE Network agrees to adopt common data model |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Our healthcare system is complex and has evolved over time rather than developing in line with an agreed grand plan. Health data is no different and while the benefits from a more standardised approach to data are enormous, achieving this presents a significant challenge. In this opinion piece the Head of Delivery, Data for Research and Development at NHS England, discusses how adoption of a common data model can help |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/news/nhs-research-sde-network-agrees-to-adopt-common-data-model/ |
| Description | New Real-World Evidence Network Co-ordination Centre for the UK |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To announce outcome of funding call, and the team that will lead a new Real-World Evidence (RWE) Network Coordination Centre for the UK. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/new-real-world-evidence-network-co-ordination-centre-for-the-uk/ |
| Description | OHDSI UK |
| 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 | In Person meeting organised by OHDSI UK and sponsored by the Health Data Research Alliance. Oral and poster presentations given by team members. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://zenodo.org/records/8309722 |
| Description | OHDSI UK 2024 Event |
| 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 | This is an academic conference organised jointly with OHDSI UK and brings together researchers, clinicians, data scientists and engineers who work with the OMOP Common Data Model for health data. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://ukhealthdata.org/news/ohdsi-uk-2024/ |
| Description | OHDSI UK 2024 web page |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is a web page sharing the outputs of an academic conference |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://ukhealthdata.org/news/ohdsi-uk-2024/ |
| Description | Oral Presentation: Public-informed training: Working with public contributors on trial methods |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Engagement with wider trials community, raising awareness of the programme |
| Year(s) Of Engagement Activity | 2024 |
| Description | PPIE - Presentation to patients, carer and public expert panel - Multimorbidity and prescriptions patterns in linked electronic health records |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Presentation to patients, carer and public expert panel - Multimorbidity and prescriptions patterns in linked electronic health records. Involvement of patient and public advisors in research and decision-making to build public trust |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.ucl.ac.uk/cardiovascular/node/2280/ |
| Description | Panel session on Using AI to Improve Mental Health Care: Challenges and Opportunities, American Medical Informatics Association Annual Symposium, Nov 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Panel session led by Pathak, Cohen, Edgcomb, Curcin, Zhang on Using AI to Improve Mental Health Care: Challenges and Opportunities sparked debate and discussion at AMIA 2023 |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://s4.goeshow.com/amia/annual/2023/schedule_at_a_glance.cfm |
| Description | Phenomics & Disease Atlas National Meeting |
| 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 | Discussing ATLAS FINDINGS, HEALTH NEEDS AND POLICY, ATLAS FINDINGS AND CLINICAL PRACTICE, ATLAS FINDINGS AND CLINICAL PRACTICE, EMERGING INITIATIVE, KEY LEARNING AND PRIORITIES FOR 2024-5: Challenges, barriers & what we can do, |
| Year(s) Of Engagement Activity | 2024 |
| Description | Phenomics and Disease Atlas National Team 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 | Communication and Release of Atlas Findings |
| Year(s) Of Engagement Activity | 2024 |
| Description | Poster presentation at American Medical Informatics Association (AMIA) Annual Symposium 2023 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation at American Medical Informatics Association (AMIA) Annual Symposium 2023 (11-15 November, New Orleans): Defining and redefining human disease at scale in the UK Biobank: a framework for disease phenotyping algorithm development and evaluation (15 Nov 2023) |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://amia.org/education-events/amia-2023-annual-symposium |
| Description | Poster presentation at American Medical Informatics Association (AMIA) Annual Symposium 2023 (11-15 November, New Orleans): Defining and redefining human disease at scale in the UK Biobank: a framework for disease phenotyping algorithm development and evaluation (15 Nov 2023) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | In UK Biobank we implemented and validated 313 disease phenotypes. Our reproducible and extensible phenotyping framework enables researchers to rapidly and accurately define and validate phenotyping algorithms from multiple sources and maximize case ascertainment. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://amia.org/education-events/amia-2023-annual-symposium |
| Description | Presentation - Disease Atlas |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited talk at the Caribbean Institute for Health Research 23-27 November 2023 |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://uwi.edu/caihr/ |
| Description | Presentation - Interpreting insights from health data of 56 million people: immediate research opportunities for UCLH clinicians and teams |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at UCLH Medical Specialties meetings 8 February 2023. Engagement of clinical specialists on the Disease Atlas - quality control and initial validation of results. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation - Systematic study of human disease at scale |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at King's College London Department of Population Health seminar 28 June 2023 |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.kcl.ac.uk/events/series/department-of-population-health-sciences-seminars-1 |
| Description | Presentation - at US Life Sciences Venture Capital meeting organised by the UK Department of Business and Trade Life Science on the Disease Atlas and CogStack spin out company |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR invited the team to present at US Life Sciences Venture Capital 'Knowledge Quarter' Academia session as part of HDR UK US Healthcare/life science VC delegation to the UK to showcase our work. Session: Leading London Universities: Technology, Spin-outs and Entrepreneurship interviews with UCL, King's, QMUL, and Imperial. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation at 'The New Wave of AI in Healthcare' Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at New York Academy of Sciences, Icahn School of Medicine at Mount Sinai meeting - The New Wave of AI in Healthcare meeting 23 May 2023. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://publichealth.nyu.edu/events-news/events/2023/05/23/new-wave-ai-healthcare |
| Description | Presentation at New York Academy of Sciences Icahn School of Medicine at Mount Sinai meeting - The New Wave of AI in Healthcare meeting 23 May 2023 - 56 million people and 'all' of our diseases |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to multi-disciplinary scientists and clinicians working at the intersection of computer science and medicine, which sparked questions and debate |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://publichealth.nyu.edu/events-news/events/2023/05/23/new-wave-ai-healthcare |
| Description | Presentation at US Life Sciences Venture Capital meeting organised by the UK Department of Business and Trade Life Science on the Disease Atlas and CogStack spin out company |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Presentation at US Life Sciences Venture Capital 'Knowledge Quarter' Academia session as part of Health Data Research UK US Healthcare/life science VC delegation to the UK to showcase our work. Session: Leading London Universities: Technology, Spin-outs and Entrepreneurship interviews with UCL, King's, QMUL, and Imperial |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation at inaugural seminar of the Institute of Cancer Research's new Centre for Trials and Population Data Science |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | MLM presented the TDfT programme and related work at the inaugural seminar for the new research Centre between ICR and Royal Marsden for clinical trials and population data science. Audience included statisticians, trialists, epidemiologists, health informaticians, PhD students, and cancer researchers (e.g. physicists). |
| Year(s) Of Engagement Activity | 2025 |
| Description | Presentation on PAG and synthetic data at the 2024 International Population Data Linkage Network Conference, Chicago |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Fiona presenting work on PAG and synthetic data at the 2024 International Population Data Linkage Network Conference, Chicago. Two outputs presented. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://virtual.oxfordabstracts.com/event/public/4995/submission/292 |
| Description | Presentation to Treialon Cymru on HDR UK and TOP-CAT |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Raise awareness to potential collaborators across Wales of the opportunities within HDR UK Wales and identification of subject matter experts. Improving research culture and capacity. Identification of subject matter experts in Wales who can contribute to training resources development. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.youtube.com/watch?v=Z9imGW6mBys |
| Description | Presentation to patients, carer and public expert panel - Multimorbidity and prescriptions patterns in linked electronic health records |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Involvement of patient and public advisors in research and decision-making to build public trust |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation to researchers at King's College London - Systematic study of human disease at scale |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on our work to better understand what diseases, or combinations of diseases, patients have, or are at risk of to staff and students at King's College London |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.kcl.ac.uk/events/series/department-of-population-health-sciences-seminars-1 |
| Description | Presentation to the BHF CVD-COVID-UK consortium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to the BHF CVD-COVID-UK consortium: Foresight: a generative AI model of patient trajectories across the COVID-19 pandemic (24 Jan 2024) |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.org/case-studies/cvd-covid-uk-consortium/ |
| Description | Presentation to the BHF CVD-COVID-UK consortium: Foresight: a generative AI model of patient trajectories across the COVID-19 pandemic |
| 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 | As a single model for all diseases in all individuals we anticipate this work will deliver benefits across multiple facets of healthcare, including those underserved in current research and policy. Examples are many, but could include virtual screening, identifying individuals at high risk of disease or emergency admission early, enabling preventative action to be taken, or simulating clinical trials to predict the effect of changing medications. Through securely sharing our work with approved researchers, the NHS and UK Government, we aim to scale this impact, accelerate the route to patient's benefiting from such research and exemplify the UK Government's AI Taskforce mission of developing world leading capability in AI and UK Sovereign foundation models. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Research Software Engineers (RSE) Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker to the Seventh Annual Research Software Engineering Conference. Presentation: Can convening a Technology Ecosystem help TREs to work together? |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://rsecon23.society-rse.org/ |
| Description | Roundtable: Harnessing Primary Care Data for Clinical Trial Recruitment |
| 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 | Dialogue with Professor Lucy Chappell, Chief Scientific Adviser for the Department of Health and Social Care to discuss trial recruitment to enable government and the NHS to improve trial processes and create an exemplar for future trials |
| Year(s) Of Engagement Activity | 2024 |
| Description | SDE Network Collaboration Event: Data for R&D Programme |
| 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 | To recognise the progress made and understand what's worked well, tackle the remaining challenges we face, capitalise on existing knowledge from across the SDE Network, and galvanise our collective passion and talent as we look to the future. |
| Year(s) Of Engagement Activity | 2024 |
| Description | SDE Network Data and Technology Community of Practice: Promotion of Phenotype library |
| 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 | Promotion of the Disease Atlas and Phenotype Library to NHS England sub national Secure Data Environments (SDEs) across England |
| Year(s) Of Engagement Activity | 2023 |
| URL | http://www.hdruk.ac.uk/research/research-data-infrastructure/disease-atlas |
| Description | SNOMED CT Expo - Atlanta, USA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented use of SNOMED and OpenEHR at a national level |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.snomed.org/events |
| Description | Second OMOP special interest group meeting - Nov 23 |
| 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 | The UK Health data Research Alliance convenes a Special Interest Group meeting, which is devoted to the OMOP common Data Model. This meetings aims to support the user community of those transforming and have transformed their data set to OMOP. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://doi.org/10.5281/zenodo.10493224 |
| Description | Seven Data Partners join pilot UK Real-World Evidence Network |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To announce the outcome of a funding call for Data Partners to join our pilot UK Real-World Evidence Network |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/seven-data-partners-join-pilot-uk-real-world-evidence-network/ |
| Description | Stakeholder Engagement: Disease Atlas Clinicians Stakeholder Meetings |
| 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 | We convened a large group of willing expert clinicians at UCLH to validate Atlas results for their specialist area and co-author the Atlas foundational paper and series of specialty papers |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/research/research-data-infrastructure/disease-atlas/ |
| Description | Stakeholder engagement - Disease Atlas Clinicians Stakeholder series of meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Validation of the Disease Atlas results and developing Disease Atlas publications |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | Stakeholder engagement - Ensuring phenotyping algorithms using national electronic health records are FAIR: Meeting the needs of the cardiometabolic research community (Nov 2023) |
| 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 | Ensuring phenotyping algorithms using national electronic health records are FAIR to inform development of the Phenotype Library and meet the needs of the cardiometabolic research community |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://zenodo.org/records/10209724 |
| Description | Sweden-UK Workshop on decentralised Clinical Trials |
| 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 | Marion Mafham and Matt Sydes, in their capacity as HDR Programme leads, were asked to organise this bilateral Sweden/UK workshop on decentralised trials as part of the Memorandum of Understanding between the UK Office for Life Science and the Swedish Government. |
| Year(s) Of Engagement Activity | 2024 |
| Description | TRE research community priorities - Landing Page Review |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | After a keynote to the SDE network attendees, a workshop was run which highlighted the proposed designs for the Gateway landing page. The purpose of this workshop was to present the designs and get feedback from the SDE networking about design and contribute to further developments/improvements that could be made |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk to European Genomic Data Infrastructure |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation covering the work of HDR UK in the technology ecosystem, the Gateway, the Phenotype Library, the Disease Atlas, Federated Analytics and cohort discovery along with DARE UK projects. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://gdi.onemilliongenomes.eu/ |
| Description | Talk: Patient and Public Involvement in trial methodology research. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Process, experiences, reflections, and recommendations from the SPIRIT- and CONSORT-Surrogate project |
| Year(s) Of Engagement Activity | 2024 |
| Description | Technology Session at HDR UK Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Focus on Technology for a Day of the HDR UK conference. A range of talks covering many different projects and promoting their adoption |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/hdruk-conference-2024/ |
| Description | The European Institute for Innovation through Health Data (i~HD) Annual Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Representing HDRUK and sharing the work we have done on 'Data Standards, Quality and Utility' over the past few years and our plans for the future. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.i-hd.eu/ac2023/ |
| Description | The Institute of Cancer Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was an invited speaker at the Institute of Cancer Research. Presentation: Health Data Research (HDR) Technology and Data Strategy. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Training webinar to the UK Trial Managers Network on accessing NHS England data for clinical trials |
| 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 | The training was to help 150 individuals in trial management to understand: 1) the principles of accessing data from NHS England and requirements to develop a successful application; and 2) how to find out what data and services are available, how to apply and the current charging and timelines. Presentations and Q&A sessions were led by two members of the Data Access Request Service (Suzanne Hartley, Louise Dunn) and an experienced clinical trialist (Macey Murray), with experience in trial management to ensure the training was focused on areas relevant to trial managers. The revised DARS online application system was demonstrated. Attendees reported afterwards that they understood more about the process and requirements of applying for NHS England data. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.tmn.ac.uk/events/uktmn-training-demystifying-access-to-data-from-NHS-England-for-clinica... |
| Description | Trials Community Insight group: Introductory meetings |
| 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 | Engagement with wider trials community and subject matter experts. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Trials Stakeholder Prioritisation Forum |
| 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 | Bringing together a wide-range of stakeholders from a 4-nations approach to prioritise the challenges for clinical trials in using healthcare systems datasets and the methods to address them: an exchange of ideas. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://ukhealthdata.org/data-standards/data-enabled-clinical-trials/ |
| Description | UK TRE Community Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson (CTO, HDR UK and Interim Director of DARE UK) was the keynote speaker at the UK TRE Community Meeting that was part of the RSE Conference. Presentation: Call to action! |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.com/e/uk-tre-community-september-meeting-tickets-676066472017 |
| Description | Visit from University of Sydney colleagues to UCL to discuss DUCkS and consent wording |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Knowledge transfer and exchange (KTE), supporting future work on consent language and data utility comparisons across continents. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Webinar on PRIMORANT study |
| 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 | Professional Practitioners |
| Results and Impact | To disseminate information on the 5 modules of online training available on HDR UK futures. Forming public trust. Increased access to training on futures; audience have access to resources to build public trust |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.tmn.ac.uk/resources/tmrp-webinars-series-7-september-2023-february-2024 |
| Description | Webinar: Trials and Data Linkage: The Art of the Possible |
| 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 | Engagement with wider data science community, raising awareness of the programme |
| Year(s) Of Engagement Activity | 2024 |
| Description | Working Group of the Clinical Trials Stakeholder Prioritisation Forum (CTSPF) to develop recommendations on improving data access for clinical trials. |
| 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 | Group convened after CTSPF meeting in Sep 2024 to draft recommendations in a green paper for policymakers on how to streamline data access for clinical trials. First meeting on 9th Jan 2025. |
| Year(s) Of Engagement Activity | 2024,2025 |
| Description | Workshop - Annotation of clinical NLP tools in HDR UK Gateway |
| 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 | The workshop discussed the requirements and implementation of meta-data to describe clinical NLP tools and resources in the HDR UK Innovation Gateway, as well as how the Gateway search capabilities can be improved using NLP. In the first part of the workshop, we discussed the requirements and plans for the Gateway. In the second part, there were two hands-on streams: one to discuss description of clinical NLP tools, and the other to demonstrate indexing of the existing Gateway data. Ideas discussed at the workshop will be developed in further discussions. |
| Year(s) Of Engagement Activity | 2023 |
| URL | http://healtex.org/healtac-2023/ |
| Description | Workshop on Data Utility Comparisons |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop on Data Utility Comparisons that increased awareness of need and discussion of how to do such comparison. Facilitating future research. Led to submission of multi-author paper (under-review) |
| Year(s) Of Engagement Activity | 2023 |
| Description | Workshop on data utility comparison studies (DUCkS) to enable the use of healthcare systems data (HSD) in a clinical trial |
| 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 | Increase awareness of need and discussion of how to do such comparison |
| Year(s) Of Engagement Activity | 2023,2024,2025 |
| Description | Workshop: Can Healthcare Systems Data be relied upon for measuring clinical trial outcomes? An updated perspective |
| 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 | Engagement with wider trials community, raising awareness of the programme |
| Year(s) Of Engagement Activity | 2024 |
| Description | techUK x OMOP Roundtable |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | techUK and Health Data Research UK (HDRUK) held a roundtable discussion on 1st November 2023 to explore the use of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) in Secure Data Environments (SDEs) and elsewhere in the NHS and research. The panel included representatives from industry, NHS organisations and academic research. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://doi.org/10.5281/zenodo.10150185 |