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 (HDR UK)

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.

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.

Organisations

Publications

10 25 50
 
Description Health Data Research UK, the Academy of Medical Sciences and the Collaboration for the Advancement of Sustainable Medical Innovation (CASMI. "Realising patient and NHS benefits from health and care data - from policy to practice" (A report on the meeting held on 22nd January 2020 at the Academy of Medical Sciences.
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
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 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 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 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 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 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 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 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 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 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 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 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 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
 
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/
 
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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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