UKRI ISCF DIH Programme Phase 3– Innovation Gateway, Health Data Research Hubs, and UK Health Data Research Alliance
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
The Digital Innovation Hub Programme aims to enable a UK-wide life sciences ecosystem that provides responsible and safe access to health data, technology and science, research and innovation services to ask and answer important health and care questions. It builds on many recent healthcare technological advances, including in digital health and genomics, and on broader developments in machine learning and artificial intelligence.
The Programme integrates with and reinforces Health Data Research UK’s investment in health data science and talent development, to stimulate the use of health data to make lives longer and healthier. It encompasses three essential functions:
1. UK Health Data Research Alliance – an Alliance of data suppliers committed to making an unprecedented breadth and depth of data available for research and innovation purposes.
2. Health Data Research Hubs – making data available, curating data, and providing expert research services. The Hubs will be centres of expertise to get from data to insight and the location to collaborate and co-create.
3. Health Data Research Innovation Gateway – providing discovery, accessibility, security and interoperability to surface data, support linkage, and enable health data science safely and efficiently.
The Programme integrates with and reinforces Health Data Research UK’s investment in health data science and talent development, to stimulate the use of health data to make lives longer and healthier. It encompasses three essential functions:
1. UK Health Data Research Alliance – an Alliance of data suppliers committed to making an unprecedented breadth and depth of data available for research and innovation purposes.
2. Health Data Research Hubs – making data available, curating data, and providing expert research services. The Hubs will be centres of expertise to get from data to insight and the location to collaborate and co-create.
3. Health Data Research Innovation Gateway – providing discovery, accessibility, security and interoperability to surface data, support linkage, and enable health data science safely and efficiently.
Technical Summary
The Digital Innovation Hub Programme aims to enable a UK-wide life sciences ecosystem that provides responsible and safe access to health data, technology and science, research and innovation services to ask and answer important health and care questions. It builds on many recent healthcare technological advances, including in digital health and genomics, and on broader developments in machine learning and artificial intelligence.
The Programme integrates with and reinforces Health Data Research UK’s investment in health data science and talent development, to stimulate the use of health data to make lives longer and healthier. It encompasses three essential functions:
A. Health Data Research Innovation Gateway – The major portion of this award, the Health Data Research Innovation Gateway will act as a common portal through which researchers and innovators in academia, industry and the NHS can search for and request access to UK health research data held by members of the Alliance and the Hubs in Trusted Research Environments to provide a safe location for data storage and access. The Gateway will support the use of data, facilitate interoperability, and provide analytical capability. It will take the form of a common web application providing the following functions:
1. The ability to search for available data
2. The facilitation of access requests to multiple data custodians
3. Integration with accredited Trusted Research Environments to provide secure access to linked datasets
4. A library of curated analytics tools and scripts
5. A dashboard to show usage and quality of datasets for research and innovation to provide transparency to data users, data custodians and the public
6. The Gateway will not store or hold health data. Data security is paramount and data will continue to be held by data custodians in Trusted Research Environments
The Gateway will be designed to operate at a national and international scale, and to be scalable as the uses of health data increases. HDR UK works in partnership with NHSX and other NHS bodies to ensure that the Gateway aligns with related NHS endeavours, including the development of clear standards for the use of technology in the NHS.
B. Health Data Research Hubs. The Hubs will be centres of expertise to get from data to insight and the location to collaborate and co-create. The Hubs are formal collaborations between NHS, academic organisations, patients, charities and industry. Each Hub will be set up to demonstrate and drive the utility of expert health data science, based on an area of expertise. This award will support development of the Hubs’ business models.
C. UK Health Data Research Alliance –The Alliance will coordinate identification and adoption of standardised tools, techniques, conventions and technologies to drive greater use of healthcare data for research and innovation in a trustworthy way. The UK Health Data Research Alliance will unite expertise and act as a clearing house for best practice in the stewardship of the UK’s health data – including patient and administrative data from the NHS, genomic data and other molecular data – to enable faster, more efficient access for research at scale. This will speed up progress in science, medicine and healthcare at a pace never achieved before in the UK. This award will support onboarding of that data.
The Programme integrates with and reinforces Health Data Research UK’s investment in health data science and talent development, to stimulate the use of health data to make lives longer and healthier. It encompasses three essential functions:
A. Health Data Research Innovation Gateway – The major portion of this award, the Health Data Research Innovation Gateway will act as a common portal through which researchers and innovators in academia, industry and the NHS can search for and request access to UK health research data held by members of the Alliance and the Hubs in Trusted Research Environments to provide a safe location for data storage and access. The Gateway will support the use of data, facilitate interoperability, and provide analytical capability. It will take the form of a common web application providing the following functions:
1. The ability to search for available data
2. The facilitation of access requests to multiple data custodians
3. Integration with accredited Trusted Research Environments to provide secure access to linked datasets
4. A library of curated analytics tools and scripts
5. A dashboard to show usage and quality of datasets for research and innovation to provide transparency to data users, data custodians and the public
6. The Gateway will not store or hold health data. Data security is paramount and data will continue to be held by data custodians in Trusted Research Environments
The Gateway will be designed to operate at a national and international scale, and to be scalable as the uses of health data increases. HDR UK works in partnership with NHSX and other NHS bodies to ensure that the Gateway aligns with related NHS endeavours, including the development of clear standards for the use of technology in the NHS.
B. Health Data Research Hubs. The Hubs will be centres of expertise to get from data to insight and the location to collaborate and co-create. The Hubs are formal collaborations between NHS, academic organisations, patients, charities and industry. Each Hub will be set up to demonstrate and drive the utility of expert health data science, based on an area of expertise. This award will support development of the Hubs’ business models.
C. UK Health Data Research Alliance –The Alliance will coordinate identification and adoption of standardised tools, techniques, conventions and technologies to drive greater use of healthcare data for research and innovation in a trustworthy way. The UK Health Data Research Alliance will unite expertise and act as a clearing house for best practice in the stewardship of the UK’s health data – including patient and administrative data from the NHS, genomic data and other molecular data – to enable faster, more efficient access for research at scale. This will speed up progress in science, medicine and healthcare at a pace never achieved before in the UK. This award will support onboarding of that data.
Organisations
- Health Data Research UK (Lead Research Organisation)
- LEEDS TEACHING HOSPITALS NHS TRUST (Collaboration)
- Royal Devon and Exeter NHS Foundation Trust (Collaboration)
- IBM (Collaboration)
- Lancashire Teaching Hospitals NHS Foundation Trust (Collaboration)
- Royal Marsden NHS Foundation Trust (Collaboration)
- University of Warwick (Collaboration)
- Microsoft Research (Collaboration)
- UNIVERSITY HOSPITALS COVENTRY AND WARWICKSHIRE NHS TRUST (Collaboration)
- West Midlands Ambulance Service NHS Foundation Trust (Collaboration)
- UK Clinical Research Collaboration (Collaboration)
- NHS DIGITAL (Collaboration)
- OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- University College London Hospitals NHS Foundation Trust (Collaboration)
- Nottinghamshire Healthcare NHS Trust (Collaboration)
- GLOUCESTERSHIRE HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Cardiff University (Collaboration)
- Guy's and St Thomas' NHS Foundation Trust (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST (Collaboration)
- CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- National Consortium of Intelligent Medical Imaging (Collaboration)
- Generation Scotland (Collaboration)
- University of Bristol (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- MANCHESTER UNIVERSITY NHS FOUNDATION TRUST (Collaboration)
- NORTHERN CARE ALLIANCE NHS FOUNDATION TRUST (Collaboration)
- Department of Health (DH) (Collaboration)
- Insignia Medical Systems Ltd (Collaboration)
- Moorfields Eye Hospital NHS Foundation Trust (Collaboration)
- South London and Maudsley (SLAM) NHS Foundation Trust (Collaboration)
- Renal Association (Collaboration)
- Oxford Health NHS Foundation Trust (Collaboration)
- UNIVERSITY HOSPITALS OF LEICESTER NHS TRUST (Collaboration)
- Public Health Scotland (Collaboration)
- National Institute for Health Research (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST (Collaboration)
- Cancer Research UK (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Imperial College Healthcare NHS Trust (Collaboration)
- UNIVERSITY HOSPITALS BRISTOL AND WESTON NHS FOUNDATION TRUST (Collaboration)
- UNIVERSITY OF DUNDEE (Collaboration)
Publications
Bailey A
(2022)
Five Safe Data Access Request Application form
Ben Gordon
(2020)
Data Utility Framework
Burrows S
(2022)
Results Alliance governance consultation
Chapman M
(2021)
Desiderata for the development of next-generation electronic health record phenotype libraries.
in GigaScience
Jefferson E
(2022)
A Hybrid Architecture (CO-CONNECT) to Facilitate Rapid Discovery and Access to Data Across the United Kingdom in Response to the COVID-19 Pandemic: Development Study.
in Journal of medical Internet research
Jefferson E
(2022)
Developing a new Governance Approval Process to support federated discovery and meta-analysis of data across the UK through the CO-CONNECT project.
in International Journal of Population Data Science
Lewer D
(2020)
Healthcare use by people who use illicit opioids (HUPIO): development of a cohort based on electronic primary care records in England.
in Wellcome open research
Lewer D
(2020)
Healthcare use by people who use illicit opioids (HUPIO): development of a cohort based on electronic primary care records in England
in Wellcome Open Research
Nada Karrar
(2021)
Analysis of Data Use Registers published by health data custodians in the UK
| Description | Alleviate: Hub for Pain |
| Amount | £2,032,575 (GBP) |
| Funding ID | MR/W014335/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2021 |
| End | 06/2024 |
| Description | CO-CONNECT: COVID - Curated and Open aNalysis aNd rEsearCh plaTform |
| Amount | £4,091,229 (GBP) |
| Funding ID | MR/V03488X/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2020 |
| End | 10/2022 |
| Description | Semi-Automated Checking of Research Outputs (SACRO) |
| Amount | £637,821 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 10/2023 |
| Description | TRE-FX: Delivering a federated network of TREs to enable safe analytics |
| Amount | £562,457 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 10/2023 |
| Title | Cohort Discovery Search Tool |
| Description | Cohort Discovery is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). This has now been integrated into numerous data custodians infrastructure including SAIL Databank, Scottish National Data Safe Haven |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Data Access Request Schema |
| Description | This is the schema underpinning the Five Safe Data Access application form currently implemented in the Health Data Research Innovation Gateway. This form is the result of an harmonisation processes which aims to standardise the way researchers can request access to data. This form can be used by health data custodians in their current data access application processes. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This access request application form has now been adopted by national data custodians across the UK (currently Health and Social Care Northern Ireland, Public Health Scotland, SAIL Databank and Office for National Statistics). It is also used by some hospital trusts and university departments and is already driving change in practice and standardisation of processes across organisation that provide access to health data. This is a first step to drive streamlined access to data, which is recognised as one of the main barriers to efficient and trustworthy research. |
| URL | https://github.com/HDRUK/schemata/pull/33 |
| Title | Data Utility Framework |
| Description | A generalisable tool to support the evaluation of a dataset, allowing a researcher to see in advance whether the dataset would be suitable for their purposes. The first of its kind, developed in consultation with dozens of data users and tested on over 50 datasets. In the process of publishing |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Has been used in the evaluation of the Digital Innovation Hub programme |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2020/11/Data-Utility-Framework_withlink.pdf |
| Title | Federated Metadata Catalogue API |
| Description | This is a catalogue including latest specifications for metadata to be onboarded on the Innovation Gateway. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | This is a new standard that can be implemented by many organisations making health data discoverable for research and innovation. These specifications are currently used in the Innovation Gateway and apply to more than 700 datasets from organisations across the UK. Researchers can publicly access technical metadata before they enquire or request access to data for their research. |
| URL | https://github.com/HDRUK/schemata |
| Title | Phenotype standard |
| Description | The HDR UK Phenotype Library is a platform to host phenotyping algorithms and harness their power for research. Our aim is to provide researchers with the "GitHub of phenotyping": an open platform for creation, storage, dissemination, re-use, evaluation, and citation of curated algorithms and metadata. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Our goal is for this to be a place where researchers can share their own work, benefit from what others have shared, and even build new collaborations. Researchers are already accessing this library. |
| URL | https://github.com/HDRUK/schemata/tree/master/schema/phenotype/latest |
| Title | Clinical response thresholds (acuity) in acutely unwell patients: onset-outcome |
| Description | Dataset from PIONEER Health Data Research Hub: Hospital patient acuity scores (2004 onwards). Granular condition, ethnicity, multi-morbidity. Serial physiology, blood biomarkers, treatments, interventions, ITU spells, outcome, pre/post admission healthcare use. Deeply phenotyped, longitudinal. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects as part of PIONEER Health Data Hub |
| URL | https://web.www.healthdatagateway.org/dataset/a9018475-452b-4864-bbc3-80eda2067820 |
| Title | Coagulopathies & arterial/venous thrombosis in COVID patients: an OMOP dataset |
| Description | Dataset from PIONEER Health Data Research Hub: Hosp patients admitted during COVID pandemic with coagulopathies including venous thromboembolic events & bleeds. Granular condition, multi-morbidity, interventions & treatments. Serial physiology, blood biomarkers, ITU spells, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Informed guidance in 60 countries on treating VTE in COVID-19. Used in projects enabled by PIONEER to support COVID-19 response |
| URL | https://web.www.healthdatagateway.org/dataset/dd4629c0-14b6-4cba-8dcf-31ec5fea68bb |
| Title | Cohort Discovery tool |
| Description | In collaboration with the CO CONNECT study and the Data and Connectivity NCS, the Cohort Discovery tool is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). |
| Type Of Material | Computer model/algorithm |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | NA |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Deeply phenotyped sepsis patients within hospital: onset, treatments & outcomes |
| Description | Dataset from PIONEER Health Data Research Hub: Hospitalised sepsis patients (2000-2020) by cause. Deeply phenotyped, longitudinal. Granular ethnicity and multi-morbidity. Serial acuity, physiology, blood parameters, treatments, interventions, ITU spells, outcomes, pre and post sepsis healthcare. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Research projects supported by PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/38ff49e2-dffa-4103-87a8-386f9f424d22 |
| Title | Deeply-phenotyped hospital COVID patients: severity, acuity, therapies, outcomes |
| Description | Dataset from PIONEER Health Data Research Hub: Hospital COVID patients (6th Jan 2020 onwards). Granular severity, ethnicity, co-morbidity. Serial physiology, blood biomarkers, images, treatments, ITU, outcome, pre/post admission healthcare use. Deeply phenotyped, longitudinal. Waves 1/ 2 |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Enabled multiple research projects and service improvements responding to COVID-19 pandemic |
| URL | https://web.www.healthdatagateway.org/dataset/16a09f1b-3654-4ec3-9913-fb70cb1e2364 |
| Title | Demography, interventions & outcomes of patients with Cerebrovascular Disease |
| Description | Dataset from PIONEER Health Data Research Hub: Patients admitted with a cerebrovascular event. Granular detail of care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting wider research activity as part of PIONEER Health Data Research Hub |
| URL | https://web.www.healthdatagateway.org/dataset/ddf7f82f-b453-442d-b562-bb0157593831 |
| Title | Healthcare use by people who use illicit opioids (HUPIO): development of a cohort based on electronic primary care records in England (extended data) |
| Description | This dataset includes:
1. Search terms used to identify codes that may represent a history of illicit opioid use 2. Codelist for identifying people with a history of illicit opioid use 3. Age- and sex-distribution of patients by product and clinical codes 4. Detailed table of mortality rates and ratios 5. Number of patients currently in the cohort 6. Age of patients at cohort entry |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| URL | https://rdr.ucl.ac.uk/articles/dataset/Healthcare_use_by_people_who_use_illicit_opioids_HUPIO_develo... |
| Title | OMOP dataset: Hospital COVID patients: severity, acuity, therapies, outcomes |
| Description | Dataset from PIONEER Hub: Hospital COVID patients 6.01.2020-20.08.2020). Granular severity, ethnicity, co-morbidity. Serial acuity, physiology, blood biomarkers, treatments, ITU, outcome. Deeply phenotyped, longitudinal. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects enabled by PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/0eb789bb-0047-46ac-83ff-631f31e98da0 |
| Title | Risk and outcomes of coagulopathies in acutely unwell adults |
| Description | Dataset from PIONEER Health Data Research Hub: Patients admitted with a bleeding or clotting disorder. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Used in projects responding to COVID-19 pandemic |
| URL | https://web.www.healthdatagateway.org/dataset/bf3fe16c-5377-4571-b5a5-7aa7e796594c |
| Title | The acute presentation of pregnant women to non-maternity Emergency departments |
| Description | Dataset from PIONEER Health Data Research Hub: Patients admitted with a pregnancy related event. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting research projects as part of PIONEER Health Data Research hub |
| URL | https://web.www.healthdatagateway.org/dataset/86632207-1e57-4272-b178-ea069a13cae1 |
| Title | The impact of COVID on hospitalised patients with COPD; a dataset in OMOP |
| Description | Dataset from PIONEER Health Data Research Hub: Hospital patients admitted during the COVID pandemic with a focus on COPD. Granular condition, multi-morbidity. Serial physiology, blood biomarkers, treatments, interventions, ITU spells, outcome, pre/post admission healthcare use. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects as part of PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/323dc330-aad9-472a-b579-ab66f5f75906 |
| Title | The impact of ethnicity and multi-morbidity on C19 hospitalised outcomes |
| Description | Dataset from PIONEER Health Data Hub: A deeply phenotyped dataset of hospitalised COVID-19 patients in Birmingham; including granular ethnicity and multi-morbidity data confirmed in primary care; physiology, blood biomarkers, treatments, interventions, ITU admissions and outcomes. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Enabled research activities evaluating the impact of COVID-19 |
| URL | https://web.www.healthdatagateway.org/dataset/cfa1ef13-8ae0-4827-8a0f-9d2df5244725 |
| Title | The impact of hospitalised patients with COPD: from admission to outcome |
| Description | Dataset from PIONEER Health Data Research Hub: Patients admitted with a COPD related event. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting research projects by PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/780bf7d0-9ee1-4641-a74f-dc148e361970 |
| Title | UHB 100K Genomics patient clinical data including their acute care contacts |
| Description | Dataset from PIONEER Health Data Research Hub: Longitudinal, routine data for University Hospitals Birmingham NHSFT patients recruited to the 100K Genomes project that accessed Acute Care at UHB. Rare cancers & diseases, adult & children. Serial & granular. Investigations, therapies, outcomes. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Support research activity through projects enabled by PIONEER |
| URL | https://web.www.healthdatagateway.org/dataset/ceae4fe0-4e98-4e3c-85db-e86539aade81 |
| Title | UHB 2019 Summer Society of Acute Medicine Benchmarking Audit |
| Description | Dataset from PIONEER Health Data Research Hub: Society of Acute Medicine Audit data. Hospital patients. Granular care pathways against national guidelines. Severity, demographics, multi-morbidity, completion of review, interventions and treatments, outcomes. Patient flow through hospital. UHBFT |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects as part of PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/5acfadf9-21a7-4517-a1b2-620d20469611 |
| Title | UHB 2020 Winter Society of Acute Medicine Benchmarking Audit |
| Description | Dataset from PIONEER Health Data Research Hub: Society of Acute Medicine Audit data. Hospital patients admitted during the COVID pandemic. Granular care pathways for reconfigured services. Severity, demographics, multi-morbidity, interventions and treatments, outcomes. Flow through hospital. UHBFT. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects as part of PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/5bf9bf39-3cd7-4a54-994b-9914405f945e |
| Title | Ventilation strategies for patients on intensive care |
| Description | Dataset from PIONEER Health Data Research Hub: Mechanical and non-invasive ventilation, tracheostomy. Ventilator settings, tidal volumes and pressures. ECMO, inotropes, other organ support, medications, investigations and serial physiology. The preceding care journey and outcomes |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects enabled by PIONEER into COVID-19 pandemic |
| URL | https://web.www.healthdatagateway.org/dataset/1a66dbc1-4f06-455c-85fc-68b372575cad |
| Title | Ventilatory strategies and outcomes for patients with COVID: a dataset in OMOP |
| Description | Dataset from PIONEER Health Data Research Hub: Hospital patients admitted during the COVID pandemic requiring/at risk of requiring ventilatory support. Granular condition, multi-morbidity, interventions and treatments. Serial physiology, blood biomarkers, ITU spells, outcome. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Supporting projects as part of PIONEER Hub |
| URL | https://web.www.healthdatagateway.org/dataset/cacba424-6c2c-4b57-8f5b-64e92a78370a |
| Description | Avon Longitudinal Study of Parents and Children (ALSPAC) |
| Organisation | University of Bristol |
| Department | Avon Longitudinal Study of Parents and Children (ALSPAC) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/.ALSPAC datasets can be found here: https://web.www.healthdatagateway.org/dataset/255d70c6-9a50-4b62-adc0-44216606a216 |
| Start Year | 2020 |
| Description | Cambridge University Hospitals - UK Health Data Alliance |
| Organisation | Cambridge University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | Cancer Research UK - UK Health Data Alliance |
| Organisation | Cancer Research UK |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | Cardiff University - UK Health Data Alliance |
| Organisation | Cardiff University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | Generation Scotland |
| Organisation | Generation Scotland |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. Generation Scotland datasets can be found here: https://web.www.healthdatagateway.org/dataset/f4f0ef1a-46cf-4734-8516-3adb0b62ae6d |
| Start Year | 2020 |
| Description | Gloucestershire Hospitals NHS Foundation Trust |
| Organisation | Gloucestershire Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | Great Ormond Street NHS Foundation Trust |
| Organisation | Great Ormond Street Hospital for Children NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. GOSH datasets can be found here: https://web.www.healthdatagateway.org/dataset/435bfcda-f378-44f6-9387-042d959eb945 |
| Start Year | 2020 |
| Description | Guy's & St Thomas' NHS Foundation Trust |
| Organisation | Guy's and St Thomas' NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | Human Fertilisation and Embryology Authority |
| Organisation | Department of Health (DH) |
| Department | Human Fertilisation and Embryology Authority (HFEA) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | Imperial College Healthcare NHS Trust - UK Health Data Alliance |
| Organisation | Imperial College Healthcare NHS Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | Lancashire Teaching Hospitals - UK Health Data Alliance |
| Organisation | Lancashire Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | Leeds Teaching Hospitals NHS Trust - UK Health Data Alliance |
| Organisation | Leeds Teaching Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | Manchester University NHS Foundation Trust - UK Health Data Alliance |
| Organisation | Manchester University NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | Maudsley NHS Foundation Trust joins the UK Health Data Research Alliance |
| Organisation | South London and Maudsley (SLAM) NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. SLAM datasets can be found here: https://web.www.healthdatagateway.org/dataset/a25a9892-9141-4e78-8415-945ba73da11e |
| Start Year | 2020 |
| Description | Moorfields Eye Hospital NHS Foundation Trust |
| Organisation | Moorfields Eye Hospital NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The UK Health Data Research Alliance has been established as a member-led collaboration to develop a portfolio of standards, tools, processes, capabilities and information governance approaches that will help organisations to unlock data-driven research and innovation. Alliance Secretariat convene the Alliance and runs regular Alliance Council meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Council meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use for health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | No known research outcomes (as of yet) that have arisen as a result of this collaboration however representatives from member organisations actively contribute to delivery sub-group or workstreams to shape standards and policies. |
| Start Year | 2023 |
| Description | NHS DigiTrials - Health Data Research Hub |
| Organisation | IBM |
| Department | IBM UK Ltd |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The hub team have developed a rapid approach to reviewing feasibility for clinical trials, supporting many high-profile trial activities in the UK, including RECOVERY and PRINCIPLE trials |
| Impact | Outputs include support to many clinical trials |
| Start Year | 2019 |
| Description | NHS DigiTrials - Health Data Research Hub |
| Organisation | Microsoft Research |
| Department | Microsoft Research Cambridge |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The hub team have developed a rapid approach to reviewing feasibility for clinical trials, supporting many high-profile trial activities in the UK, including RECOVERY and PRINCIPLE trials |
| Impact | Outputs include support to many clinical trials |
| Start Year | 2019 |
| Description | NHS DigiTrials - Health Data Research Hub |
| Organisation | NHS Digital |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The hub team have developed a rapid approach to reviewing feasibility for clinical trials, supporting many high-profile trial activities in the UK, including RECOVERY and PRINCIPLE trials |
| Impact | Outputs include support to many clinical trials |
| Start Year | 2019 |
| Description | NHS DigiTrials - Health Data Research Hub |
| Organisation | University of Oxford |
| Department | Oxford Hub |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The hub team have developed a rapid approach to reviewing feasibility for clinical trials, supporting many high-profile trial activities in the UK, including RECOVERY and PRINCIPLE trials |
| Impact | Outputs include support to many clinical trials |
| Start Year | 2019 |
| Description | NIHR Clinical Research Network |
| Organisation | National Institute for Health Research |
| Department | NIHR Clinical Research Network (CRN) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | National Consortium of Intelligent Medical Imaging |
| Organisation | National Consortium of Intelligent Medical Imaging |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | Neonatal Data Analysis Unit Imperial College London |
| Organisation | Imperial College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. National Neonatal Research database datasets can be found here: https://web.www.healthdatagateway.org/dataset/67020745-9def-4c6e-b5ac-bb273bd0a20e |
| Start Year | 2020 |
| Description | Northern Care Alliance NHS Foundation Trust - UK Health Data Alliance |
| Organisation | Northern Care Alliance NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | Nottinghamshire Healthcare NHS Foundation Trust |
| Organisation | Nottinghamshire Healthcare NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance to drive development and implementation of best practice for the use of health data in the UK. HDR UK is responsible for coordinating the programme of work of the Alliance on behalf of its partners. |
| Collaborator Contribution | Alliance members actively participate in delivery sub-groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Alliance members list metadata in the Innovation Gateway and commit to make datasets more discoverable and accessible. |
| Start Year | 2020 |
| Description | Oxford Health NHS Foundation - UK Health Data Alliance |
| Organisation | Oxford Health NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | Oxford University Hospitals NHS Foundation Trust |
| Organisation | Oxford University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | PIONEER Health Data Research Hub |
| Organisation | Insignia Medical Systems Ltd |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The Hub team have engaged with industry, academia and the NHS in many high-profile data-led projects, as well as PPIE activities, direct support to SMEs and development of local and international guidance |
| Impact | Outputs include dozens of research projects, multiple datasets, papers, improved policy and clinical practice and PPIE |
| Start Year | 2019 |
| Description | PIONEER Health Data Research Hub |
| Organisation | University Hospitals Birmingham NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The Hub team have engaged with industry, academia and the NHS in many high-profile data-led projects, as well as PPIE activities, direct support to SMEs and development of local and international guidance |
| Impact | Outputs include dozens of research projects, multiple datasets, papers, improved policy and clinical practice and PPIE |
| Start Year | 2019 |
| Description | PIONEER Health Data Research Hub |
| Organisation | University of Birmingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The Hub team have engaged with industry, academia and the NHS in many high-profile data-led projects, as well as PPIE activities, direct support to SMEs and development of local and international guidance |
| Impact | Outputs include dozens of research projects, multiple datasets, papers, improved policy and clinical practice and PPIE |
| Start Year | 2019 |
| Description | PIONEER Health Data Research Hub |
| Organisation | University of Warwick |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The Hub team have engaged with industry, academia and the NHS in many high-profile data-led projects, as well as PPIE activities, direct support to SMEs and development of local and international guidance |
| Impact | Outputs include dozens of research projects, multiple datasets, papers, improved policy and clinical practice and PPIE |
| Start Year | 2019 |
| Description | PIONEER Health Data Research Hub |
| Organisation | West Midlands Ambulance Service NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The HDR UK team have directly supported the work of the Health Data Research Hub by deploying core funding to contribute to the development of the Hub. In addition to this, the team within HDR UK have supported the work of the Hub through sharing best practice, managing delivery and engaging with regular sessions to monitor progress |
| Collaborator Contribution | The Hub team have engaged with industry, academia and the NHS in many high-profile data-led projects, as well as PPIE activities, direct support to SMEs and development of local and international guidance |
| Impact | Outputs include dozens of research projects, multiple datasets, papers, improved policy and clinical practice and PPIE |
| Start Year | 2019 |
| Description | Public Health Scotland |
| Organisation | Public Health Scotland |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. Public Health Scotland datasets can be found here: https://web.www.healthdatagateway.org/search?search=public%20health%20scotland&publisher=ALLIANCE%20%3E%20PUBLIC%20HEALTH%20SCOTLAND&tab=Datasets |
| Start Year | 2020 |
| Description | Royal Devon and Exeter NHS Foundation Trust -UK Health Data Alliance |
| Organisation | Royal Devon and Exeter NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | The Renal Association - UK Health Data Alliance |
| Organisation | Renal Association |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | The Royal Marsden NHS Foundation Trust - UK Health Data Alliance |
| Organisation | Royal Marsden NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | UK Brain Bank Network |
| Organisation | Medical Research Council (MRC) |
| Department | MRC UK Brain Banks Network |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. Brain Bank Network datasets can be found here: https://web.www.healthdatagateway.org/dataset/6f1b9a4e-2367-47f1-a985-3ed9bf3a7211 |
| Start Year | 2020 |
| Description | UKCRC Tissue Directory and Coordination Centre |
| Organisation | UK Clinical Research Collaboration |
| Department | Tissue Directory and Coordination Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. TDCC datasets can be found here: https://web.www.healthdatagateway.org/search?search=tissue%20direcotry&publisher=ALLIANCE%20%3E%20TISSUE%20DIRECTORY&tab=Datasets |
| Start Year | 2020 |
| Description | University College London Hospitals NHS Foundation Trust |
| Organisation | University College London Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. |
| Start Year | 2020 |
| Description | University Hospitals Bristol and Weston NHS Foundation Trust - UK Health Data Alliance |
| Organisation | University Hospitals Bristol and Weston NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2021 |
| Description | University Hospitals Coventry and Warwickshire - UK Health Data Alliance |
| Organisation | University Hospitals Coventry and Warwickshire NHS Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Description | University Hospitals Leicester NHS Trust |
| Organisation | University Hospitals of Leicester NHS Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. SLAM datasets can be found here: https://web.www.healthdatagateway.org/dataset/a25a9892-9141-4e78-8415-945ba73da11e |
| Start Year | 2020 |
| Description | University of Dundee's Health Informatics Centre |
| Organisation | University of Dundee |
| Department | Health Informatics Centre |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | HDR UK convenes the UK Health Data Research Alliance, a strong partnership of data custodians which includes a variety of organisations (research charities, national data custodian, hospital trusts, biobanks and research organisations). The Alliance brings together the data custodian community to drive best practice for the use of health data in the UK. HDR UK coordinates the programme of work of the Alliance which consists in delivering five delivery sub-groups (data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway). |
| Collaborator Contribution | Each member of the Alliance works in partnership with HDR UK to drive development and implementation of best practice for the use of health data in the UK. Alliance members actively participate in sub-delivery groups on data quality and standards, patient and public involvement, trusted research environments, improving data access, and supporting development of the Innovation Gateway. Members also commit to open data and sharing principles and share metadata of the data they hold in the Innovation Gateway to increase discoverability and use. |
| Impact | Each Alliance member provides input at regular Board meetings as well as participate in delivery sub-group to deliver recommendations on use of health data in the UK. All outputs generated via the Alliance are disseminated via our websites (https://ukhealthdata.org/ and https://www.hdruk.ac.uk/). Each Alliance members list their datasets in the Innovation Gateway: https://www.healthdatagateway.org/. HIC datasets can be found here: https://web.www.healthdatagateway.org/search?search=Dundee&publisher=HEALTH%20INFORMATICS%20CENTRE%20-%20UNIVERSITY%20OF%20DUNDEE&tab=Datasets |
| Start Year | 2020 |
| Description | University of Nottingham - UK Health Data Alliance |
| Organisation | University of Nottingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The Alliance is an independent network of healthcare and research organisations committed to establish best practice for ethical use of health data for research and innovation. The internal Alliance team convene the Alliance and runs regular Alliance Board meetings bringing together representatives from each member organisation. In addition, we drive engagement with Alliance members in various workstream activities: https://ukhealthdata.org/work/, which leads to development of recommendations and best practice or policy documents made available for the wider community. |
| Collaborator Contribution | Partner organisations regularly attend quarterly Alliance Board meetings to discuss policy updates, recent development across the health data ecosystems and report on progress on data use of health research. Members also actively contribute to delivery sub-group or workstreams to shape standards and policies. Alliance members also use our infrastructure services, including the Innovation Gateway to make their data more discoverable and accessible, and meet the FAIR principles requirements. |
| Impact | Recommendations for a data use register standard to be adopted by organisations responsible for the safe sharing of data used for research and innovation. A guide for UK data custodians and other organisations involved in data sharing and information governance both within and beyond the health sectors through Trusted Research Environments (TRE's). |
| Start Year | 2022 |
| Title | Cohort Discovery Service |
| Description | Cohort Discovery is a new Gateway feature that will allow users to carry out a more specific search and assessment on datasets listed in the Gateway to improve the discovery of datasets. Using the tool users can search across multiple datasets to find cohorts (groups) of patients with specific, defined characteristics (e.g patients that don't smoke aged between 18-30 and who live in England). We hope the tool will save both researchers time in finding datasets they need for their research, and also save data custodians time, by minimising enquiries to them about the content of the datasets they hold. Statistical disclosure control policies are in place by default by data custodians on the query results, so low numbers of patients will be excluded to minimise any potential risk of identification. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Impact | Nine data custodians have been onboarded into the Cohort Discovery Service which covers a population of 51K subjects. Total subjects discoverable via Cohort Discovery - 41.8K from 8 datasets across: Conditions - 184 Observations - 24 Measurements - 264 Drugs/Medication - 4 Demographics - 18 |
| URL | https://www.healthdatagateway.org/about/cohort-discovery |
| Title | Courses on the Innovation Gateway |
| Description | Courses and qualifications related to health data research |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Allows users to search for relevant courses and qualifications |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Courses |
| Title | Data Use Register & Data Use Widget |
| Description | A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by who and most importantly for what purpose. The Gateway has implemented a Data Use Register to improve the transparency and visibility of research projects undertaken across our Alliance data custodians. A widget for the data use register is also available and aims to provide further transparency in the use of health data for research by making data uses more accessible. Once embedded in a custodian's website, a clickable button takes visitors from a custodian's webpage to the Gateway data use register - prefiltered to display their data uses only - in a single step. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Improved transparency of research Improved discoverability of research Better coordination and standardisation of data use reporting |
| URL | https://web.www.healthdatagateway.org/search?search=&tab=Datauses |
| Title | Gateway Data Access Request Service |
| Description | Our ambition is for the Gateway to support a streamlined, proportionate approach to access requests based on the five safes model for research and innovation uses with a clearpublic benefit, in line with the Principles for Participation. We aim to make life easier for both requestors and decision makers through a combinationof automation, built-in validation, transparency of progress and the capability to hostvirtual data access request panels. The intention is to build on existing cross-sector best practice both nationally across the UKand internationally. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | For data custodians with existing 'in house' web-based workflow solutions, the module provides validated inputs to their approvals processes andreceive time stamped progress updates for key process points. For data custodians with 'MS Word' based documentation and offline workflow, the module helps them harmonise and streamline theirapproach and provide a scalable, web-based workflow. For new data custodians, the module provides the opportunity to move straight to a 'best of breed' web-based access management request solution. The Gateway provides allows researchers communicate with data custodians directly and confirm data sharing requirements before requesting access, which saves time. |
| URL | https://www.healthdatagateway.org/about/data-access-request-process |
| Title | Gateway Federated Metadata Onboarding Service |
| Description | Federated metadata onboarding allows data providers to synchronise existing metadata catalogues with the Gateway |
| Type Of Technology | Webtool/Application |
| Year Produced | 2023 |
| Open Source License? | Yes |
| Impact | Synchronising metadata catalogues means researchers can view the most up to date descriptions of health datasets and data providers only have to maintain a single source of truth |
| Title | Gateway Metadata Onboarding Service |
| Description | The metadata onboarding form enables data custodians to make their datasets findable through the Gateway by providing rich metadata descriptions of their datasets. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Provides an opportunity for datasets to be pulled into the Gateway from external metadata catalogues |
| Title | Gateway Search Service |
| Description | The Health Data Research Innovation Gateway is a common entry point for researchers and innovators to search for and find datasets of interest and to request access to. It is possible to search for health datasets and health data assets via a keyword search and filtering options. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Gateway search is based on the HDR UK dataset specification, which is an Alliance-approved standard for describing health datasets, reviewed and recreated with researcher discovery in mind. It includes summary information about the dataset and descriptions of the technical detail of the tables and columns held within the dataset. The standard descriptions allow potential data applicants to understand and assess the usability of data without enquiring directly, saving time for everyone. |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Datasets |
| Title | Health Data Research Innovation Gateway |
| Description | The Health Data Research Innovation Gateway API service source code |
| Type Of Technology | Software |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Integrations with external services from industry - MetadataWorks, BC Platforms, FutureNHS |
| URL | https://doi.org/10.5281/zenodo.4461676 |
| Title | Health Data Research Innovation Gateway |
| Description | The Innovation Gateway provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access. The Gateway includes the ability to search for research projects, publications and health data tools, such as those related to COVID-19. New interactive features provide a community forum for researchers to collaborate and connect and the ability to add research projects. The Innovation Gateway does not hold or store any datasets or patient or health data but rather acts as a portal to allow discovery of datasets and to request access to them for health research. To access the data, users need to sign in and then follow the access request process. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Both data custodians and researchers community are increasingly using the Innovation Gateway to drive use of health data in research. The Gateway provides a common front door for researchers to search, discover and understand data before they request access to it. On the other end, the Gateway is enabling a streamlined and harmonised access process for data custodians listing their data in the portal. By addressing one of the main issues in data driven research, access to data, the Gateway is enabling and accelerating discoveries based on safe and trustworthy use of health datasets. |
| URL | https://www.healthdatagateway.org/ |
| Title | Health Data Research UK GitHub Repository |
| Description | Open-source code for the Innovation Gateway |
| Type Of Technology | Webtool/Application |
| Year Produced | 2020 |
| Open Source License? | Yes |
| Impact | Open-source code for the Innovation Gateway |
| URL | https://github.com/HDRUK |
| Title | Innovation Gateway Standards |
| Description | Innovation Gateway Standards |
| Type Of Technology | Software |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Adoption of the standards by the community - SAIL, NHS Digital, Research Data Scotland, Office of National Statistics |
| URL | https://github.com/HDRUK/schemata |
| Title | Phenotype Library |
| Description | The HDR UK Phenotype Library is a comprehensive, open access resource providing the research community with information, tools and phenotyping algorithms for UK electronic health records. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | When patients interact with physicians, or are admitted into hospital, information is collected electronically on their symptoms, diagnoses, laboratory test results, and prescriptions. This information is stored securely in Electronic Health Records (EHR) and is a valuable resource for researchers and clinicians for improving health and healthcare. EHRs are however of variable detail and quality and contain many inconsistencies. As a result, researchers and data providers spend considerable time creating complex computer programs to fix and statistically analyse the information in EHR and identify which patients have which disease. Currently, there is no means to share these tools across institutions in the UK resulting in duplication of effort. Reproducibility of research is also hampered as others do not have access to the precise methods and definitions used in a particular study. This project addresses these issues by creating an open resource for EHR users (researchers, clinicians, the NHS and data providers) to share their methods. |
| URL | https://phenotypes.healthdatagateway.org/ |
| Title | Publications on the Innovation Gateway |
| Description | Pre-prints papers and articles which site the use of health datasets for research (uploaded by Gateway users) |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Ability for users to search for publications alongside health datasets |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Papers |
| Title | Tools on the Innovation Gateway |
| Description | Software, scripts and useful resources (uploaded by Gateway users) |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | Allows users to search for relevant tools, scripts and software to support them in their research. |
| URL | https://web.www.healthdatagateway.org/search?search=&datasetSort=latest&tab=Tools |
| Description | 1 July 2020 Institute for Government Data Bites Event. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | 1 March 2021 CUGH 2021 - Equitably harnessing the power of health data: Time for Action and Collaboration |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2021 |
| Description | 12 March 2020 Diabetes UK - UK Diabetes Data Hub workshop London |
| 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 | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | 18 September 2020 WEBINAR Invitation "Towards a trustworthy data governance for healthcare technologies". |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | 19 January 2021 Cross-Party Group on Life Sciences: "Focus on the economic impact of the pharmaceutical industry and healthcare data". ABPI - |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2021 |
| Description | 25 March 2020 Virtual GA4GH Connect: Kick-off & Roadmap Session |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | 25th January 2021 Translate! 2021 - Panel: Data Science and Stewardship. "Accelerating Precision Health by Data Sciences"., |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2021 |
| Description | 26th February 2020 UK-Japan Joint Symposium on Data-Driven Health Academy of Medical Sciences |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | 3 March 2021 Academy of Medical Sciences FORUM/MHRA joint roundtable on 'Regulatory Science: Advancing Regulatory Science for Innovative Medical Products' |
| 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 | N/A |
| Year(s) Of Engagement Activity | 2021 |
| Description | 9 November 2020 BioData World Congress Plenary Day 1. Panel: Realising transformative innovations in health data sciences: The need for novel collaborative business models". |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | AMS/HDRUK/CASMI/DIT January 2020 meeting: Realising the value of healthcare data from policy to practice Academy of Medical Sciences |
| 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 | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | About the Alliance - One page brochure |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A one page, easy to digest brochure/document. Standardised messaging around the Alliance. To be used when engaging with relevant stakeholders. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/06/Alliance_4_page-0001-scaled.jpg |
| Description | Academy of Medical Royal Colleges, London Personal Demographic Data Workshop 17 January 2020 |
| 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 | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | Alliance Community Bulletin - Feb 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-February-2023.pdf |
| Description | Alliance Community Bulletin - Jan 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-January-2023.pdf |
| Description | Alliance Community Bulletin - Mar 23 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | These monthly bulletins are shared with all Alliance members and they include news about Alliance related activities, opportunities and events, and relevant news from the wider health data ecosystem. We also allow Member organisations the opportunity to share their news, with the Alliance community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/09/Alliance-community-bulletin-March-2023.pdf |
| Description | Alliance and Hubs Data Officers Group Meeting - Feb 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 | We bring together data officers from across the Alliance to oversee, coordinate, and produce Alliance guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/06/DOG-Feb-2023-Meeting-Notes-Actions-final-.pdf |
| Description | Alliance and Hubs Data Officers Group Meeting - February 22 |
| 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 | We brings together data officers from across the Alliance to oversee, coordinate, and produce Alliance guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/data-standards-and-quality/ |
| Description | Alliance and Hubs Data Officers Group Meeting - May 22 |
| 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 | We brings together data officers from across the Alliance to oversee, coordinate, and produce Alliance guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/data-standards-and-quality/ |
| Description | Alliance and Hubs Data Officers Group Meeting - September 22 |
| 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 | We brings together data officers from across the Alliance to oversee, coordinate, and produce Alliance guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/data-standards-and-quality/ |
| Description | Alliance and Hubs PPIE Workstream Quarterly Meeting - February 22 |
| 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 | We bring together representatives from Alliance members to share best practice in public and patient involvement. Topics covered in this session: 1) Growing our understanding of PPIE work in this area. 2) Identifying areas of work for us as a collective. 3) Opportunity to Raise a Topic of Interest. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/engaging-and-involving-practitioners-patients-and-the-public/ |
| Description | Alliance and Hubs PPIE Workstream Quarterly Meeting - July 22 |
| 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 | We bring together representatives from Alliance members to share best practice in public and patient involvement. Topics covered in this session: 1) Working with underrepresented and underserved groups. 2) Building trust in data governance through public involvement. 3) Update - Introducing the Public Engagement in Data Research Initiative. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/engaging-and-involving-practitioners-patients-and-the-public/ |
| Description | Alliance and Hubs PPIE Workstream Quarterly Meeting - October 22 |
| 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 | We bring together representatives from Alliance members to share best practice in public and patient involvement. Topics covered in this session: 1) Creating a diverse and inclusive environment for meaningful PPIE. 2) Embedding the patient and public perspective across the Alliance. 3) General updates |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/engaging-and-involving-practitioners-patients-and-the-public/ |
| Description | An introduction to the UK Health Data Research Alliance - Brochure |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Standardised messaging around the Alliance, clear articulation of model and publicising the work of the Alliance to-date. To be used when engaging with relevant stakeholders. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/07/HDRUK_ALLIANCE_BROCHURE.pdf |
| Description | Asia Pacific Association for Medical Informatics (APAMI) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Named speaker (Neil Postlethwaite, Technical Director, HDR UK) at Asia Pacific Association for Medical Informatics (APAMI) meeting. Presentation: HDR UK's experience in building our Health Data Innovation Gateway and convening Trusted Research Environments. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://apami2022.tw/ |
| Description | Beilstein Open Science Symposium |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | In this talk, I will show how HDR UK is enabling open science by facilitating the discovery of health data, and simplifying the process of requesting access to multiple datasets. I'll discuss HDR UK's approach to embedding transparency on research data usage for patients and public, and summarise some of the key ways in which HDR UK has contributed to the coronavirus pandemic. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.slideshare.net/VarshaKhodiyar/lessons-from-the-ukdata-access-patient-trust-realworld-imp... |
| Description | Better Care Insight Sharing Day (speaker) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Quarterly Better Care Insights Sharing Day to inform on progress made by teams working across the UK. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2022/03/Better-Care-24-02-2022_FINAL.pdf |
| Description | Biobanking showcase |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Conference bringing together industry and academia around biobanks and cohort data. The aim of our participation was to increase visibility of the work around improving and streamlining data access and information governance and increase awareness around UK data assets. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://biobankinguk.org/uk-biobanking-showcase-2021/ |
| Description | Black Internship Programme Closing Ceremony |
| 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 intended purpose of this meeting was to celebrate the achievement of the interns during the internship - the skills they developed, the projects they worked on, the training they completed. It was also intended as a networking event for host orgs and interns from all participating organisations to meet each other and build their networks to continue contact beyond the conclusion of the programme and develop an alumni community. The impact is that our alumni community has grown, some of the interns joined our Advisory Group to provide their thoughts on next year's programme, made connections with each other external to the programme and also continued using Futures for their health data needs. For other interns, they cemented their relationship with us and have since told us about job opportunities they have gained since finishing their internships. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/black-internships-programme-2022-success-lays-foundations-for-the-futur... |
| Description | Black Internship Programme Launch 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 | The intended purpose of this meeting was to introduce HDR UK and its mission / purpose, introduce the interns to each other, introduce them to the training that we provide as part of the internship and to provide suggestions / tips from our alumni on making the most of their opportunity. Interns were given the opportunity to ask questions and meet our Training team and also hear from our Director who welcomed them into our community as well as from Martin Levermore, Chair of the Black Internship Programme Advisory Group, who spoke about the aims of the programme. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.technologynetworks.com/tn/product-news/the-uks-national-institute-for-health-data-scienc... |
| Description | Building a legacy for UK Health Data Research Infrastructure Event (hybrid) - June 22 |
| 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 event showcased the impact to date of the DIH Programme achieved through the outstanding partnerships of organisations and people across the UK to establish a strong foundation for the future. Attendees heard about the latest developments in technology, infrastructure and standards that is supporting trustworthy research with health data. The event connected colleagues working in the data field across healthcare, academia, charities, industry and with patient groups by showcasing the impacts of the DIH Programme. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news-opinion-events/events/building-a-legacy-for-uk-health-data-research-inf... |
| Description | Building a legacy for UK health data research infrastructure (speaker) |
| 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 'Alleviate: the Advanced Pain Discovery Platform (APDP) Data Hub' for the DIH Programme Showcase Event: Building a legacy for UK health data research infrastructure. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=DLRU_35dfYQ&list=PLBI5k9SgYrItfzjZ17c1b20GUp6V2wDRH&index=15 |
| Description | CO-CONNECT End of Project Conference (organiser and speaker) |
| 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 | An event to commemorate the end of the CO-CONNECT project. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://co-connect.ac.uk/co-connect-draws-to-a-close/ |
| Description | Call for UK data custodians to map health data for public benefit is open |
| 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 | EHDEN bring years of experience around development of expert networks around data quality and interopearability. New UK data partners now have the opportunity to join this wider European network and ensure UK practices align with international best practice. UK data partners can also participate in EHDEN driven research studies to enable use of mapped data and generate impact. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/call-for-uk-data-custodians-to-map-health-data-for-global-benefit/ |
| Description | Cambridge Spark Lecture Series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Presentation: Overcoming the Challenges of Providing Access to Population Scale, Routinely Collected Health and Imaging Data for AI Development whilst Protecting Patient Confidentiality. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Cohort Discovery Explainer Video |
| 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 | Other audiences |
| Results and Impact | An explainer video about the Cohort Discovery search tool, developed for the tool's landing page on the Gateway website. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=yvFrnbXlqRk |
| Description | ConTech Pharma conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Conference bringing together industry, technologies and small enterprises around use of digital technologies. The aim of our participation was to increase visibility of the work around improving and streamlining data access and information governance and increase awareness around UK data assets. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.contech-event.com/ConTechPharma2022?lang=en |
| Description | Data Access Deep Dive for patients and the public |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Patients and public representatives discussed issues around access to health data for research and how technology can help drive innovation while ensuring trust and safeguarding privacy. The outcome of this workshop directly informed development of the Innovation Gateway data access module and views were incorporated in recommendations for data custodians. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Data Access and Discovery Webinar Series |
| 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 | Bi-monthly webinar series for the health data community, covering a range of topics aimed primarily at users of the HDR Innovation Gateway but wider audiences too. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/from-tres-to-the-brian-app-our-2022-data-access-and-discovery-webinars-... |
| Description | Data Officers Group 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 | In this meeting many representatives from Alliance member organisations and Research Hubs discussed issues around data standards and data element mapping. They also had a working session on improving ethnicity coding which informed further activity for the group. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Data Saves Lives: The Fight Against Covid-19 |
| 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 | . |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=CKuuY1LNv-0 |
| Description | Data to Early Diagnosis & Precision Medicine Centres of Excellence Showcase |
| 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 | David Seymour (Director of Infrastructure & Services, HDR UK) attended the Centres of Excellence Showcase Event: Data to Early Diagnosis and Precision Medicine Challenge. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ncimi.co.uk/latest/centres-of-excellence-showcase-event/ |
| Description | Digital Data Workshop hosted by the University of Glasgow |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other audiences |
| Results and Impact | An interactive workshop on the access and regulation of digital data in clinically translational projects. We were invited to talk about the HDR Innovation Gateway and the work of the UK Health Data Research Alliance. |
| Year(s) Of Engagement Activity | 2021,2022 |
| URL | https://www.gla.ac.uk/myglasgow/news/newsarchive/2022/1august2022/headline_865394_en.html |
| Description | Diversity in Data - Ethnicity coding working group - April 22 |
| 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 is convened by the UK Health Data Research Alliance with the aim to bring together communities to address concerns around use of ethnicity data. In this session we discuss the need of harmonisation around terminology and definitions when working with ethnicity data. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/diversity-in-data/ |
| Description | Diversity in Data - Ethnicity coding working group - Jan 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 is convened by the UK Health Data Research Alliance with the aim to bring together communities to address concerns around use of ethnicity data. This third meeting provided an opportunity for stakeholders working in this area to share their thoughts and feedback on a first draft of a set of recommendations to improve the capturing and recording of ethnicity data in the UK, based on community feedback and input received so far. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://zenodo.org/records/8138530 |
| Description | Diversity in Data - Ethnicity coding working group - January 22 |
| 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 is convened by the UK Health Data Research Alliance with the aim to bring together communities to address concerns around use of ethnicity data. In this first meeting we discuss standards around ethnicity coding and to address ethnicity coding issues in data management for health research. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/diversity-in-data/ |
| Description | EHDEN podcast: an exploration of HDR UK and the Alliance |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Podcast to explore Health Data Research UK and UK Alliance, strategy and collaborating with EHDEN |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://anchor.fm/ehden/episodes/An-exploration-of-Health-Data-Research-UK-and-UK-Alliance---the-Dat... |
| 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 | Embracing the power of health data across the charity sector |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | A blog post examining the value of charitable investment (and collaboration) in research, with a focus on Alliance members from the charity sector and their data assets on the Gateway. Linked to a Data Access and Discovery webinar. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/embracing-the-power-of-health-data-across-the-charity-sector/ |
| Description | Event review: 25 November 2020. Using health and social care datasets in research - opportunities, assets and examples |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | NHS Digital shared all content presented at the 'Using health and social care datasets in research - opportunities, assets, examples' and reached out to a vast community of researchers interested in accessing health data. These resources are useful for researchers to learn more about processes involved in accessing and using health data. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://digital.nhs.uk/services/research-advisory-group/using-health-and-social-care-datasets-in-res... |
| Description | Event/workshop: Involving patients and the public and demonstrating public benefit in research involving health and social care datasets |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | This event is aimed at researchers, public contributors and others interested in research involving existing health and social care data. It will give insights into working in partnership with people and communities and on how to demonstrate public benefit: HRA will describe the who, how, why and when of working in partnership, along with practical tips, examples and links of where to find out more Office of the National Data Guardian will provide information on forthcoming guidance on public benefit HDR UK will talk through how the public benefit guidance relates to those seeking access to existing health and social care data through HDR UK's Innovation Gateway |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.rds-wm.nihr.ac.uk/involving-patients-and-the-public-and-demonstrating-public-benefit-in-... |
| Description | Event/workshop: Researcher roadshow: using health and social care datasets in research practical advice to support your research journey |
| 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 | Hosted by the National Institute for Health Research (NIHR) Research Design Service, the event also contained sessions from Health Data Research UK (HDR UK), Medical Research Council (MRC) Regulatory Support Centre, and the Healthcare Quality Improvement Partnership (HQIP). It covered topics including: an introduction to new data sets available for researchers from NHS Digital how researchers can use Health Data Research UK (HDR UK)'s Innovation Gateway a summary of the governance approvals required when undertaking health data research from the MRC Regulatory Support Centre an overview of HQIP's national datasets and how they can be accessed for research and other secondary uses |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://digital.nhs.uk/services/research-advisory-group/events/practical-advice-to-support-your-rese... |
| Description | First Innovation Gateway Data Access workshop |
| 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 | This was part of a series of workshops to gather input from relevant stakeholders on best practice around access to health data, learn about data access processes and inform the technical development of the Innovation Gateway (a portal for researchers to discover and access health data). |
| Year(s) Of Engagement Activity | 2020 |
| Description | GHGA - German Human Genome-Phenome Archive |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | Conference bringing together industry and academia to discuss use of health data and implementation of trusted research environments. The aim of our participation was to increase visibility of the work around improving and streamlining data access, information governance, trusted research environments, data use register standards; and increase awareness around data assets available in the UK. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR Innovation Gateway Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Monthly online newsletter for the Gateway community, including researchers and data custodians, to share news, events, and developments. |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | HDR UK Community Meeting - Scotland (speaker) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Invited speaker to HDR UK Community Meeting (Scotland) - one of a series of meetings intended to build partnerships and collaborations across the health data research community. Presentation: The Technology Ecosystem, Phenomics and Prognostic Atlas. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK Infrastructure and Science Retreat (invited speaker) |
| 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 | HDR UK strategic planning working group. |
| Year(s) Of Engagement Activity | 2022 |
| Description | HDR UK Multi-omics Cohorts Consortium NIP Insight Sharing Day |
| 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 | Invited speaker to HDR UK Multi-omics Cohorts Consortium National Implementation Project Insight Sharing Day. Presentation: Experiences of developing a TRE to support multi-omic data within the AWS cloud. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Science and Infrastructure Delivery 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 | . |
| Year(s) Of Engagement Activity | 2021 |
| Description | HDR UK Technology Ecosystem Conference/Workshop (organiser and speaker) |
| 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 | The purpose of the meeting was to kick off the Technology Ecosystem work as part of HDR UK 23-28 strategy, bringing together various overlapping initiatives to share knowledge and plan for how we will work together going forward. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK and NCRI Early Career Researcher Webinar |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | A workshop 'Finding and accessing health data for research' held in partnership with the National Cancer Research Institute for their Early Career Researcher Forum. Our speakers shared examples of how data is currently being used to support cancer research, plus information on the processes involved in requesting access to health and care data for research. We also introduced the Health Data Research Innovation Gateway, our portal for discovering and requesting access to health data, and HDR Futures - our virtual learning platform. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.youtube.com/watch?v=_hjtCLwDg_M |
| Description | Health Data Research UK welcomes new Scottish Alliance members |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/health-data-research-uk-welcomes-new-scottish-alliance-members/ |
| Description | How can we support adoption of the data use register standard? |
| 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 blog was published several months after publication of the White Paper on recommendations for data use register standard. The blog aimed to highlight the immediate impact of the standard, by highlighting custodians that had already adopted some of the key principles. HDR UK's implementation of the standard, through development of the Gateway data use register was also communicated. A call to action was made for custodians to begin using the Gateway register, as a platform to improve transparency of their data uses. To date 18 custodians have published the data uses on the Gateway. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/how-can-we-support-adoption-of-the-data-use-register-standard/ |
| Description | Hub Milestone 3 Panel Assessment - 05 April 2022 09:30-17:00 |
| 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 M3 assessment was an Independent panel, made up of 9 members of the health research landscape (academia, industry, NHS) inc. one patient/public representatives, Hub teams (x 6) The Digital Innovation Hubs were required to evidence enhanced service delivery through additional publishable case studies that demonstrate further impact and value to researchers, innovators, patients and populations as part of the final milestone of the Digital innovation hub programme. Impact: The assessment showed the breadth of activity Hubs have delivered, including sustainable data services which have impacted a wide range of stakeholders including industry. They also outlined how PPIE activity in the Hub has delivered and will continue to deliver real change. Recommendations were provided by an expert panel on how hubs could further drive sustainability and impact within their structure. |
| Year(s) Of Engagement Activity | 2012,2022 |
| Description | Hub Sustainability Masterclass - 11 January 2022 14:00-14:45 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Masterclass webinar series, with speakers from a diverse range of technology, research, industry and healthcare institutions. Each speaker shared their learnings and experience on key areas required for successful growth and sustainability. Impact: Hubs and Alliance members heard from a variety of experts on how to best shape plans for sustainability as part of Milestone 3 Hub assessment. |
| Year(s) Of Engagement Activity | 2022 |
| Description | ICDA Scientific Meeting on March 9-10, 2020 Denmark |
| 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 | N/A |
| Year(s) Of Engagement Activity | 2020 |
| Description | Improving Access to Linked Data for Research - October 22 |
| 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 aim of this workshop was to convene key stakeholders to achieve the following objectives: 1) To identify opportunities for unlocking the potential linkages of consented and routinely collected health data. 2) To map data access processes. 3) To understand the landscape surrounding data access agreements. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/10/Workshop-Summary-Final-PDF.pdf |
| Description | Improving transparency in data use - Demos of the Gateway DUR |
| 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 demo covered: how to search and view data uses, upload new data uses, edit and archive active data uses and the automatic generation of data uses (following approval of the Gateway Five Safes form). |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/projects/improving-transparency-in-data-use/ |
| Description | Increasing collaboration and promoting partnerships |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/increasing-collaboration-and-promoting-partnerships/ |
| Description | International Data Week |
| 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 | Susheel Varma (Director of Engineering and Interim CTO, HDR UK) was a speaker at International Data Week 2022. Presentation: Seeing a FOREST through the TREs. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://internationaldataweek.org/idw2022/ |
| Description | International Workshop on Science Gateways (IWSG 2022) |
| 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 | Ruth Milne (Gateway Content and Community Lead, HDR UK) was named speaker at IWSG 2022, presenting on the accepted conference proceeding: The Health Data Research Innovation Gateway: A platform to discover, request access to health data and demonstrate trustworthiness in research across the United Kingdom and beyond. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://iwsgateways.github.io/iwsg2022/ |
| Description | Invited speaker: Experiences of developing a TRE to support multi-omic data within the AWS cloud. Multi-omic insight sharing day. |
| 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 of HDR UK was an invited speaker to present 'Experiences of developing a TRE to support multi-omic data within the AWS cloud' as part of the Multi-omic insight sharing day on the 9th March 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited speaker: Experiences of developing a TRE to support multi-omic data within the AWS cloud. Multi-omic insight sharing day. |
| 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 of HDR UK was an invited speaker to present 'Experiences of developing a TRE to support multi-omic data within the AWS cloud' as part of the Multi-omic insight sharing day on the 9th March 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited speaker: HDR Technology Ecosystem and the Gateway: UKRI Data Infrastructure Club Show and Tell |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Emily Jefferson was an invited speaker, leading a presentation on the HDR UK Technology Ecosystem and the Gateway at the UKRI Data Infrastructure Club Show and Tell: 31st Jan 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Invited speaker: HDR Technology Ecosystem. UK DRI Informatics Scoping Event - London. 8th and 9th March 2023 |
| 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 of HDR UK was an invited speaker to lead a presentation on the HDR Technology Ecosystem at the UK DRI Informatics Scoping Event - London. 8th and 9th March 2023 |
| Year(s) Of Engagement Activity | 2023 |
| 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 power of DRI: A health data perspective. UKRI Digital Research Infrastructure (DRI) Congress. |
| 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 was an invited speaker to present on: The power of DRI: A health data perspective at the UKRI Digital Research Infrastructure (DRI) Congress. 6th and 7th March 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Masterclass - Mike Denis - 02 March 2022 10:30-11:15 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Masterclass webinar series, with speakers from a diverse range of technology, research, industry and healthcare institutions. Each speaker shared their learnings and experience on key areas required for successful growth and sustainability. Impact: Hubs and Alliance members heard from a variety of experts on how to best shape plans for sustainability as part of Milestone 3 Hub assessment. |
| Year(s) Of Engagement Activity | 2022 |
| Description | NIHR BRC Directors Forum - 8 Jun 22 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Provide the BRC Directors with information on the digital landscape |
| Year(s) Of Engagement Activity | 2022 |
| Description | NIHR BRC Directors Induction Meeting - 6 Oct 22 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation and Q&A for new BRC Directors session on Working Together - Digital Health |
| Year(s) Of Engagement Activity | 2022 |
| Description | NIHR Strategy Board session on data access for researchers - 10 Nov 22 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Input to working session on "What more can NIHR do to support researchers and other experts create patient benefit through health and care data research?" |
| Year(s) Of Engagement Activity | 2022 |
| Description | NNRD board meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This was an invited talk to provide an update to the NNRD Board around joint work on streamlining data access for NNRD and implementation via the Gateway. |
| Year(s) Of Engagement Activity | 2022 |
| Description | New data partners join cross-border effort to standardise data to the Observational Medical Outcomes Partnership (OMOP) common data model |
| 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 | The Alliance partnered with EHDEN to co-fund the last call for data partners to map their data sources to the OMOP (Observational Medical Outcome Partnership) common data model. The aim was to drive alignment around standards internationally and enable UK data custodian adopt OMOP and increase data quality and interoperability. HDR UK funded 5 UK data partners who are now part of the EHDEN network. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/hdr-uk-with-ehden-to-announce-a-total-of-22-data-partners-have-been-sel... |
| Description | News article (member announcement): Mental Health trusts in England and the 'Children of the 90s' study join alliance for health data research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/mental-health-trusts-in-england-and-the-children-of-the-90s-study-join... |
| Description | News article (member announcement): UK Health Data Research Alliance continues to grow with three new members |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/uk-health-data-research-alliance-continues-to-grow-with-three-new-memb... |
| Description | News article (member announcement): UK Health Data Research Alliance expands membership |
| 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 | Engaging new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/uk-health-data-research-alliance-expands-with-three-new-members-includ... |
| Description | News story (TRE workstream): Next steps on the journey to Trusted Research Environments |
| 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 | The purpose of this news story was to highlight work to date on development of Trusted Research Environments. WE aimed to bring the community together to input on recommendations for the safe and trustworthy us of health data via promoting access via secure research environment rather than via data distribution. This is a culture shift and requires many players to work together and agree common goals. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/next-steps-on-the-journey-to-trusted-research-environments/ |
| Description | Opinion article: Championing diversity and inclusion through data |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This article signalled the start of an important piece of work to meet the goals of our diversity and inclusion policy and helped engaging relevant stakeholders in further work. Importance of diversity of datasets in producing meaningful scientific insights has been acknowledged by all Alliance members. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.hdruk.ac.uk/news/championing-diversity-and-inclusion-through-data/ |
| Description | Opinion article: Collaboration and open data at its best: UK Biobank and HDR Innovation Gateway |
| 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 article helped increasing awareness of relevant datasets available via the Innovation Gateway and demonstrated the strength of the partnership between HDR UK and the UK Biobank through the Alliance. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/uk-biobank-and-hdr-innovation-gateway/ |
| Description | Opinion article: Collaboration is key to unlocking the potential of healthcare data - our new Alliance member NCIMI |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.hdruk.ac.uk/news/collaboration-is-key-to-unlocking-the-potential-of-healthcare-data-our-... |
| Description | Opinion article: Meet our new Alliance member! NIHR's Clinical Research Network |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/news/meet-our-new-alliance-member-nihrs-clinical-research-network/ |
| Description | Opinion article: The promise of AI for health data research |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This was an outputs from discussions held at the Alliance Symposium in December 2020. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/the-promise-of-ai-for-health-data-research/ |
| Description | Quinquennial Review workshop - UK Health Data Research Alliance: Ethics, Governance and Trust |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Discussions on the next HDR UK funding submission and the continued work of the UK Alliance Health Data Research Alliance- including ongoing partnerships on technology, but the underpinning governance, ethics, standards, public engagement and data curation to enable health data research. Continuing the work on TREs and enabled discovery and safe research access to over 720 datasets held by 60 data custodians. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2022/02/220204_Section-1-Overview-of-HDR-UK_FINAL_PUBLISH... |
| Description | Record response for our 7th and final open call for Data Partners! |
| 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 | EHDEN bring years of experience around development of expert networks around data quality and interopearability. New UK data partners now have the opportunity to join this wider European network and ensure UK practices align with international best practice. UK data partners can also participate in EHDEN driven research studies to enable use of mapped data and generate impact. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.ehden.eu/record-response-for-our-7th-and-final-open-call-for-data-partners/ |
| Description | Research Data Scotland data access workshop |
| 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 | A workshop to discuss implementation of data access management systems in Scottish services. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Results of the Alliance Governance Consultation |
| 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 | Over the past few months The Alliance have run a consultation with its Members, to update the Alliance governance and ways of working as we move into the next five years of the Alliance. The results of this Consultation were shared with Members at the January Alliance Board Meeting and a proposal, outlining plans for developing an Alliance Council (currently Alliance Board) and a smaller and representative Alliance Executive Committee was presented. There was a consensus from the board members that this proposal was acceptable. The Alliance secretariat will now focus on developing Terms of Reference for the Alliance Council and Alliance Executive Committee and update relevant documentation. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/news/50709/ |
| Description | Second Innovation Gateway Data Access workshop |
| 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 | This was part of a series of workshops to gather input from relevant stakeholders on best practice around access to health data, learn about data access processes and inform the technical development of the Innovation Gateway (a portal for researchers to discover and access health data). |
| Year(s) Of Engagement Activity | 2020 |
| Description | Setting the standards for transparency in the use of health data |
| 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 news article aimed to communicate and endorse the Alliance's White Paper on recommendations for a data use register standard. It summarised the key principles of the White Paper, as well as highlighting the need and value of the standard, through supportive quotes from custodians, researchers and public contributors. The article also communicated the immediate next steps planned by the Alliance to build on the publication of the standard. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/news/setting-the-standards-for-transparency-in-the-use-of-health-data/ |
| Description | Synthetic Data workshop (in-person) - June 22 |
| 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 aim of the workshop was to bring together those who are interested in generating or accessing synthetic data for research, to share latest developments and advances in the field, and to understand the barriers to wider use of synthetic data. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/08/220705-Synthetic-Data-Workshop-Outputs-June-2022... |
| Description | TechUK Panel Discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | David Seymour (Director of Infrastructure and Services, HDR UK) invited as speaker/panel member to TechUK event: Exploring Secure Data Environments - what are they and what do they mean for suppliers? |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.techuk.org/what-we-deliver/events/exploring-secure-data-environments-what-are-they-and-w... |
| Description | Technology Services Ecosystem, Phenomics and Prognostic Atlas - HDR Scotland Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson, CTO of HDR UK was an invited speaker to present on the Technology Services Ecosystem, Phenomics and Prognostic Atlas at the HDR Scotland Conference - 24th Jan 2023. |
| Year(s) Of Engagement Activity | 2023 |
| Description | The HDR Innovation Gateway |
| 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 | . |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=_32HTX1joGo |
| Description | The Technology Ecosystem, Phenomics and Prognostic Atlas. HDR Scotland Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Emily Jefferson, CTO of HDR UK was an invited speaker to present on The Technology Ecosystem, Phenomics and Prognostic Atlas at the HDR Scotland Conference. 24th Jan 2023 |
| Year(s) Of Engagement Activity | 2023 |
| Description | Third Innovation Gateway Data Access workshop |
| 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 | This was part of a series of workshops to gather input from relevant stakeholders on best practice around access to health data, learn about data access processes and inform the technical development of the Innovation Gateway (a portal for researchers to discover and access health data). |
| Year(s) Of Engagement Activity | 2020 |
| Description | Trusted Research Environments workshop |
| 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 working group discussed the concept of a Trusted Research Environment and agreed to take next steps to ensure safe and trustworthy access and use of health data for research and innovation. The input of this group directly informed development of a green paper that went out for public consultation and was eventually published. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://ukhealthdata.org/wp-content/uploads/2020/04/Trusted-Research-Environments_Workshop-12.03.20_... |
| Description | Two years of the Health Data Research Innovation Gateway (blog) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | A blog to acknowledge two years of the HDR Innovation Gateway, including an interactive timeline to showcase the Gateway's journey to date. Shared via multiple digital channels. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/two-years-of-the-health-data-research-innovation-gateway/ |
| Description | UK DRI Informatics Scoping Event (speaker) |
| 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 | Invited speaker to UK Dementia Research Institute Informatics Scoping Event. Presentation on HDR UK's Technology Ecosystem Workstream. |
| Year(s) Of Engagement Activity | 2023 |
| Description | UK Health Data Research Alliance Board meeting (April) |
| 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 Board discussed improvements to data access processes and opportunities to accelerate access to address the COVID-19 pandemic. The meeting was also used for important information sharing that led to new collaborative work. |
| Year(s) Of Engagement Activity | 2020 |
| Description | UK Health Data Research Alliance Board meeting (January 21) |
| 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 | This Alliance Board meeting gathered more than 50 representatives from the member organisations (including both custodians and research hubs). Part of the meeting was dedicated to developments in COVID-19 vaccine research and improving health data access. Many Alliance members agreed to engage in further activities to increase transparency of how data is used for research. |
| Year(s) Of Engagement Activity | 2021 |
| Description | UK Health Data Research Alliance Board meeting (January) |
| 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 Board discussed data quality and standards, the concept of Trusted Research Environment and ways for Health Data Research Hubs to become sustainable and agreed next steps to progress this work forward. |
| Year(s) Of Engagement Activity | 2020 |
| Description | UK Health Data Research Alliance Board meeting (July) |
| 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 Board discussed engagement and participation in developing the data access request module of the Innovation Gateway (a researcher platform for data discovery). The Board also agreed next steps in relation to metadata improvement to make data more useful for research. |
| Year(s) Of Engagement Activity | 2020 |
| Description | UK Health Data Research Alliance Board meeting (October) |
| 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 Board discussed progress of the National Core Study programme (to accelerate response to the COVID-19 pandemic) and had a deep dive session on data utility and ways to improve usability of datasets for research. Many of the members also agreed to engage in a new launched Black internship programme for data custodian organisations. |
| Year(s) Of Engagement Activity | 2020 |
| Description | UK Health Data Research Alliance Board meeting - April 22 |
| 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 | Senior leaders from partner organisations join the Alliance Board to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/05/Alliance-Board-Meeting-Actions-and-meeting-notes... |
| Description | UK Health Data Research Alliance Board meeting - January 22 |
| 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 | Senior leaders from partner organisations join the Alliance Board to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/04/26.01.22-Alliance-Board-Meeting-Actions-and-meet... |
| Description | UK Health Data Research Alliance Board meeting - January 23 |
| 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 | Senior leaders from partner organisations join the Alliance Board to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ukhealthdata.org/wp-content/uploads/2023/02/20230126-Alliance-Board-Meeting-Actions-and-meet... |
| Description | UK Health Data Research Alliance Board meeting - July 22 |
| 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 | Senior leaders from partner organisations join the Alliance Board to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/08/20.07.22-Alliance-Board-Meeting-Actions-and-meet... |
| Description | UK Health Data Research Alliance Board meeting - October 22 |
| 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 | Senior leaders from partner organisations join the Alliance Board to provide oversight and direction of the Alliance |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/10/20221014-Alliance-Board-Meeting-Actions-and-meet... |
| Description | UK Health Data Research Alliance welcomes Cancer Research UK |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/health-data-research-uk-alliance-welcomes-cancer-research-uk/ |
| Description | UK Health Data Research Alliance welcomes new member UK LLC |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/uk-health-data-research-alliance-welcomes-new-member/ |
| Description | UK Health Data Research Alliance welcomes three new members |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/uk-health-data-research-alliance-welcomes-three-new-members/ |
| Description | UK Health Data Research Alliance welcomes two new members |
| 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 | Engagement with new Alliance members increases collaboration and accelerates implementation of best practice for the use of health data in the UK and beyond |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/uk-health-data-research-alliance-welcomes-two-new-members/ |
| Description | UK data Hub to advance necessary research into chronic pain |
| 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 | Health Data Research UK (HDR UK), the Medical Research Council (MRC) and Versus Arthritis announced a new Hub called Alleviate: APDP Pain Research Data Hub (Alleviate Hub); advancing necessary research into chronic pain. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hdruk.ac.uk/news/uk-data-hub-to-advance-necessary-research-into-chronic-pain/?utm_source... |
| Description | UKRI DRI Community Congress (speaker) |
| 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 | The UKRI Digital Research Infrastructure (DRI) Community Congress brought together stakeholders of the UKRI DRI strategy. Presentation: The power of DRI: A health data perspective. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://web.cvent.com/event/fc0032b7-0b22-4dd0-8c4c-38f3155df75f/summary |
| Description | Using health and social care data for research |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | This event provided useful information for researchers interested in requesting access to health data from data custodians. The event was organised in partnership with NIHR Research Design Service, the MRC Regulatory Support centre, NHS Digital and Healthcare Quality Improvement Partnership. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.rdsblog.org.uk/using-health-and-social-care-data-for-research |
| Description | Using linked data for research: challenges and opportunities within the UK health ecosystem |
| 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 blog summarise the key opportunities, pain points and means of troubleshooting those pain points when it comes to linking consented with routinely-collected data in an NHS context from the perspectives of relevant leaders, policymakers, clinicians, and researchers as well as that of the public. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/using-linked-data-for-research-challenges-and-opportunities-within-the-... |
| Description | Using linked data for research: challenges and opportunities within the UK health ecosystem - July 22 |
| 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 UK Health Data Research Alliance convened a workshop to discuss the challenges and opportunities that surround the use of linked data for health research. In particular, the group explored the issues that researchers and health professionals face when attempting to link consented health research data (that requiring active assent from those providing it, e.g. the donation of biological specimens) with routinely collected health data |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://ukhealthdata.org/wp-content/uploads/2022/09/Linking-Data-for-research-Workshop-Summary-FINAL... |
| Description | Webinar for the Quebec Research Fund |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Conference bringing together healthcare professional from Quebec and Canada and present the work of HDR UK, in particular Alliance standards, training and international partnerships. The aim was to increase visibility of our work and discuss convening role of the Alliance, as well as increase awareness around data assets available in the UK. Plans around Quebec Research Fund and HDR UK collaboration are under discussion. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://frq.gouv.qc.ca/en/webinaire-de-presentation-hdr-uk-plateforme-donnees-royaume-uni/ |
| Description | Workshow: Data Access Deep Dive |
| 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 | We brought together experts from the data custodian community to provide input on ways to improve health data access. the outcome of this meeting directly informed the development of the Innovation Gateway (a researcher portal for data discovery). |
| Year(s) Of Engagement Activity | 2020 |
| Description | https://www.hdruk.ac.uk/news/exploring-mental-health-datasets-on-the-gateway/ |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Article exploring mental health related resources listed on the HDR Innovation Gateway. Part of a wider organisational campaign on mental health. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.hdruk.ac.uk/news/exploring-mental-health-datasets-on-the-gateway/ |
| Description | techUK Event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | David Seymour (Director of Infrastructure & Services, HDR UK) was an invited speaker at the techUK panel discussion: Exploring Secure Data Environments - what are they and what do they mean for suppliers? David gave a talk and presentation on An Introduction to Secure Data Environments. This event aimed to provide both an introduction to TREs and SDEs, and a deep dive into ongoing work at Health Data Research UK (HDR UK), NHS England's Transformation Directorate, and the Department for Health and Social Care. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.techuk.org/what-we-deliver/events/exploring-secure-data-environments-what-are-they-and-w... |