Latest news

The latest Gateway developments
15 Nov 2022
The latest Gateway developments

Our November release concentrated on three areas of development:

  • Further improvements to search, building on previous developments to design and usability of the Gateway search results page.
  • Enhancements to the interface of the Gateway homepage to support an easier and more intuitive user experience.
  • Updates to the customisations of the Five Safes data access request application form.

Read more about November's release, and previous releases, via our release notes page.


November Gateway Newsletter out now
08 Nov 2022
November Gateway Newsletter out now

The latest Gateway newsletter is now available to read. In this edition:

  • Learn about Discover-NOW, HDR UK's hub for real world evidence.
  • Access the slides and recording from our recent webinar which focussed on charitable organisations and how they're using health data science to progress research.
  • Discover November's Gateway Collection of the Month.

Read November's Gateway newsletter here.

Be the first to know about all the latest Gateway updates and events by subscribing to our monthly newsletter.


Latest datasets listed on the Gateway - October 2022
01 Nov 2022
Latest datasets listed on the Gateway - October 2022

In October, three new datasets were added to the Gateway - one each from DaSH, DataLoch and SAIL.

Grampian Data Safe Haven (DaSH)

The Aberdeen Children of the 1950s is a dataset gathered through a longitudinal study from 12,150 participants born in Aberdeen between 1950 and 1956 that was repeated in the 1990s, 2000s and is still ongoing. The most recent part of the study was conducted in 2021 and examined views on Covid-19. Learn more about the study on their website.

DataLoch

The oncology database was established in 2019 building on 40+ years of data collection across the region of the South East Scotland Cancer Network. The database holds data on diagnosis, treatment and outcomes of patients undergoing care within the region.

Secure Anonymised Information Linkage Databank (SAIL)

This dataset contains details of antiviral and monoclonal antibody drugs prescribed to patients to treat Covid-19.

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Search and discover over 750 datasets currently listed on the Health Data Research Innovation Gateway.


Data Access and Discovery webinar recording - October 2022
21 Oct 2022
Data Access and Discovery webinar recording - October 2022

Our October Data Access and Discovery webinar focussed on charitable organisations and how they're utilising and investing in the power of health data science to progress research. Access the slides and recording below.

Special thanks to the AMRC for their support in organising this event.

We were joined by two charities from across the health data research community to discuss their work in this area:

  • John Nolan, Senior Health Data Scientist at the British Heart Foundation Data Science Centre discussed the work of their health data science team and their CVD-COVID-UK and structured data projects.

View John's slides here.

  • Fiachra Woodman, Chief Technology Officer at the Brain Tumour Charity, spoke about the Brian app, which has revolutionised how patients and carers record PROMS data and collaborate as a community.

View Fiachra's slides here.

  • Ruth Milne, Gateway Content and Community Lead at HDR UK, also introduced the theme which focussed on the value of charitable organisations to research in the UK and how HDR UK is working with a number of charities to make health data more discoverable.

View Ruth's slides here.

A Q&A followed with additional panellists:

  • Reecha Sofat, the Breckenridge Chair of Clinical Pharmacology and Therapeutics and Head of the Department of Pharmacology and Therapeutics at the University of Liverpool, and Associate Director of the British Heart Foundation Data Science Centre.
  • Angela Wood, Professor in Health Data Science at the University of Cambridge and Associate Director of the British Heart Foundation Data Science Centre.
  • Andrew Short, Managing Director, Medli.

Please find below links to watch a recording of the webinar and find the answers to the questions we didn't have time to ask the panel:

We hope to see you next time! Follow HDR UK's Events page to stay updated about all our upcoming meetings, webinars and other community activities.


New datasets published on the Gateway - September 2022
11 Oct 2022
New datasets published on the Gateway - September 2022

Three new datasets were added to the Gateway in September, including two from DATALOCH - a secure data service developed by the University of Edinburgh and NHS Lothian enabling improvements in health and social care.

DataLoch

CogStack - King’s College Hospital

Search and discover over 750 datasets currently listed on the Health Data Research Innovation Gateway.


Exploring mental health datasets on the Gateway
10 Oct 2022
Exploring mental health datasets on the Gateway

For World Mental Health Day, we explore some of the mental health-related datasets discoverable on the Health Data Research Innovation Gateway.

Poor mental health can affect anyone at any time in their lives, and research has shown that people with a mental health problem are more likely to experience a preventative physical health problem like heart disease. Yet mental health research in the UK is persistently underfunded compared to other areas of health science.

However, the UK is home to some of the best mental health data in the world, and there is enormous potential to bring together and use these data in research to progress our understanding of mental health, improve patient outcomes, and reduce pressure on health care at an accelerated pace.

To recognise World Mental Health Day, we explore some of the mental health-related datasets published on the Gateway and take a look at how mental health data are currently being used in research projects via the Gateway data use register.

Read the full article on the HDR UK website.

Part of our Data Saves Lives: Mental Health campaign.

Image courtesy of the Mental Health Foundation.


Out now! The October Gateway Newsletter
07 Oct 2022
Out now! The October Gateway Newsletter

The latest Gateway newsletter is now available. Find out about:

Read the October newsletter here.

Be the first to know about all the latest Gateway updates and events by subscribing to our monthly newsletter.


Data Saves Lives: Mental Health
30 Sep 2022
Data Saves Lives: Mental Health

Ahead of World Mental Health Day on 10 October, Health Data Research UK has launched a campaign to highlight the potential of big data to address long-standing inequalities faced by people affected by mental health conditions.

The UK is home to some of the best data in the world which researchers across the Health Data Research UK community are harnessing to better understand and improve the lives of people with mental health conditions.

The Data Saves Live: Mental Health campaign aims to share and celebrate the impact already made by the health data research community in reducing mental health care inequalities through data science - over the next weeks look out for news, events, resources and more by following #DataSavesLives on Twitter for the latest updates or visit the mental health campaign hub.

In the meantime, explore the Mental Health Collection on the Gateway.


Development update - release of the data use register widget
27 Sep 2022
Development update - release of the data use register widget

We launched the Gateway data use register earlier this year to help improve transparency in the use of health data for research by providing a public record of how datasets are being used, by whom and for what purpose. There are currently over 800 data uses published on the Gateway data use register.

We have now developed a widget for data use register that can be integrated into a data custodian’s website to provide a direct link to their data uses published on the Gateway, providing further transparency in the use of health data for research by making data uses more accessible to researchers, funders and the public. Learn more about the Gateway data use register and the widget in the links below.

Useful links

Data Access and Discovery webinar - October 2022
20 Sep 2022
Data Access and Discovery webinar - October 2022

Come along to our October Data Access and Discovery event, where we'll be joined by charities from across the health data research sector to discuss their work in this area.

John Nolan
, Senior Health Data Scientist at the British Heart Foundation Data Science Centre will be discussing the work of their health data science team and their CVD-COVID-UK and structured data projects.

Fiachra Woodman, Chief Technology Officer at the Brain Tumour Charity, will be talking about the Brian app, which aims to help people and those supporting them to cope with a brain tumour and make better informed decisions.

  • Date: Thursday 13 October
  • Time: 11am (1 hour)
  • Theme: Charitable organisations in the health data research sector

Register here.


Now available - September's Gateway Newsletter
16 Sep 2022
Now available - September's Gateway Newsletter

The September Gateway newsletter is now available. In this issue:

  • Access the resources and findings from our recent Gateway workshop
  • Learn more about Discover-Now, our featured Gateway collection of the month
  • Hear from the CO-CONNECT team about how they added the Follow-COVID dataset to the Gateway (clue: data entry by the box load)
  • And more!

Read the September Gateway newsletter here.


A data story from the CO-CONNECT team
13 Sep 2022
A data story from the CO-CONNECT team

In this blog post, the CO-CONNET team describe what it took to get the Follow-COVID cohort live on the Gateway, including the manual entry of 47,842 individual data values!

Follow-COVID is a study of over 100 patients across multiple regions within Scotland over the course of 6 years. The study seeks to identify the long term consequences and future care needs of COVID-19 survivors.

CO-CONNECT is a £4m data project to accelerate COVID-19 research by enabling scientists across the UK to access the data they need more easily.


Latest datasets published on the Gateway - August 2022
05 Sep 2022
Latest datasets published on the Gateway - August 2022

In August, six new datasets were added to the Gateway, and all from the same data custodian: DataLoch.

  • NHS Lothian GP data – includes all clinical and non-clinical events that GPs have recorded for the patient.
  • NHS Lothian Critical Care – data relating to patients requiring critical care treatment (i.e. in intensive care and high-dependency units) in the NHS Lothian area, including admissions, severity of illness, organ-support treatments and therapies, and outcomes of treatment.
  • NHS Lothian Lab Results – includes laboratory test results undertaken in NHS Lothian’s haematology, biochemistry, and microbiology labs, covering both primary and secondary care.
  • Deaths: National Records of Scotland – cause of death data from the National Records of Scotland.
  • Lothian Community Prescribing – summary data of prescriptions dispensed by community pharmacies since 2009 where the prescriber is located within NHS Lothian, including drug strength, formulation and dispensed quantity data.
  • Lothian Primary and Secondary Care with Phenotypes – a curated dataset that integrates the codes used by NHS Lothian GPs and hospitals/facilities, along with national records, to summarise patient conditions based on the defined standards from the HDR UK Phenotype Library.

Explore how DataLoch data are being used in research via the Gateway data use register, including studies on the effects of COVID-19 on acute cardiac care and the clinical characteristics and treatment patterns of early breast cancer patients in Scotland.


Emily Jefferson announced as HDR UK's new CTO
01 Sep 2022
Emily Jefferson announced as HDR UK's new CTO

Health Data Research UK has appointed Professor Emily Jefferson as its new Chief Technology Officer.

Emily joins HDR UK after a decade as academic lead and Director of the Health Informatics Centre (HIC) at the University of Dundee, and comes with an outstanding track record of collaboration across HDR UK’s broad community of partners including her role as Director of the HDR Alleviate Pain Data Hub; as Co-Principal Investigator for the CO-CONNECT programme, and as work package lead on the HDR UK Phenotype Library and the HDR UK Multi-omics Project.

She will take up her new post at the end of November 2022 and will lead on the development and delivery of technology services, including the Health Data Research Innovation Gateway.

Welcome to the team, Emily!

Read more in this press release on the HDR UK website.


Celebrating 1000 phenotypes
31 Aug 2022
Celebrating 1000 phenotypes

1000 phenotypes have now been added to Health Data Research UK's Phenotype Library. The milestone marks the library as the largest national resource for information, tools and phenotyping algorithms to allow researchers to harness data held in Electronic Health Records.

Electronic Health Records (EHR) are a valuable resource for researchers and clinicians for improving health and healthcare, but the detail and quality of the information they contain is variable and inconsistent. This means that researchers and data providers spend a lot of time building complex computer programs to fix and statistically analyse the information in EHRs and identify which patients have which disease.

The HDR UK Phenotype Library provides a national standard for creating, evaluating and representing phenotypes, enabling EHR users (researchers, clinicians, the NHS and data providers) to share their methods and accelerate scientific discovery through improved transparency and reproducibility.

The library is integrated with health dataset information across the Gateway allowing custodians to select relevant library-defined phenotypes when onboarding datasets and users to refine their search results with the phenotype filter option.

Hear from the Phenotype Library project leads in this news announcement celebrating the achievement.


Findings now available to view from our August Gateway workshop
19 Aug 2022
Findings now available to view from our August Gateway workshop

Our bimonthly Data Access and Discovery webinar series took on a slightly different and extended format for August as we wanted an opportunity to hear and learn directly from some of our Gateway users. We are pleased to share the results of our poll, the introductory slides and our post-workshop analysis below.

It started with a poll

After a quick welcome, we began with a short survey to understand the current level of awareness and engagement with the Gateway amongst our attendees. It’s great to see that the majority of participants had heard of the Gateway prior to attending, but most attendees had either never visited the Gateway before or visited infrequently.

In addition, most of our audience had never made a data access enquiry via the Gateway, and most people described the Gateway as moderately easy.

View the survey questions and results in more detail

A short history of the Gateway

Gerry Reilly – who joined HDR UK in 2018 to lead the development of our technology and infrastructure strategy, and our current Technologist in Residence – then delivered a brief overview of the Gateway, covering its past, present and future milestones which set us up nicely for our breakout room sessions.

View Gerry’s slides here

The Breakout Rooms

Our attendees were split into four breakout rooms for a collaborative virtual whiteboard session using digital sticky notes (we used Jam Board, but others are available). Each room worked through the same activities led by a member of staff from HDR UK.

Across participants, we had a range of representation from academic and clinical research to the general public as well as attendees from the private sector, whose collective expertise included data science, the life sciences and clinical health.

Our attendees identified publication search engines (for example, PubMed) and cloud and computing services (for example, Google and Amazon) as their most commonly used web-based research support tools. We found that ‘data information’ (for example, metadata and data quality) was the main challenge our attendees come across when searching for data, closely followed by data availability, access and discovery.

In terms of the Gateway as a platform to discover and access health datasets for research, our participants liked its service and support aspect the most, closely followed by the number of datasets published on the site that are now more discoverable as a result. They also recommended that we focus on improving the search functionality to encourage wider use of the Gateway.

View the detailed breakout rooms analysis

Thank you for attending

A big thank you to all our attendees and hosts for a great workshop – we enjoyed the conversations, learned a lot, and the findings gathered with will help us to improve the Gateway experience for everyone.

If you have any feedback, comments or questions about this session, including the finding shared above, or the Data Access and Discovery webinar series in general please reach out to Ruth Milne. Alternatively, you are welcome to leave any thoughts or replies on our Gateway Community Forum webinar threads.


August's Gateway Newsletter now available
08 Aug 2022
August's Gateway Newsletter now available

The August edition of the Gateway newsletter is out now. Find out about:

  • Our next Data Access and Discovery workshop - an interactive session and an opportunity to share your thoughts and feedback on the Gateway
  • How a small but significant improvement to search now makes it easier and to find what you're looking for
  • A set of graphical tools we've created that can used by anyone looking for simple explainers about some of the key Gateway functionalities (this issue's Collection of the Month)

And more!

Access the August Gateway newsletter here.


Development update - an improvement to search
01 Aug 2022
Development update - an improvement to search

As part of our latest release, we are pleased to report a small but significant improvement to search. You can now apply multiple filters to enhance the results generated from a primary search - hurrah! Before, you could only select one filter at a time.

Here's an example using the the search term 'COVID-19'.

Typing 'COVID-19' into the search text box generates a results page with 167 datasets, plus other resources which can be filtered too, but in this example we are focussed on datasets.

If you select the first three active options under the ‘Publisher’ filter:

  • Avon Longitudinal Study Parents And Children
  • Barts Health
  • BHF Data Science Centre

This will narrow the results to three datasets, and you can see the filters applied listed at the top of the search results page. Irrelevant or inactive filter values based on the search term are not selectable - you can see these as greyed out.

Selecting the next available filter - Breathe - changes the results to four datasets. You can see two inactive options above Breathe:

  • Born in Bradford
  • Brain Tumour charity

These filters cannot be selected because they are not relevant to the original search team or the subsequent filters applied.

Before this update, you could only select a single option within a filter, so to find COVID-19-related datasets from the four custodians used in this example you would need to perform four separate searches.

We hope the change makes it easier and more intuitive to filter search results on the Gateway, but have a go yourself and let us know what you think.

Search and discover more than 750 datasets on the HDR Innovation Gateway.

Check out our release notes page for all the latest development updates.


The Alliance welcomes two new members: CRUK and UK LLC
22 Jul 2022
The Alliance welcomes two new members: CRUK and UK LLC

The UK Health Data Research Alliance recently welcomed two new members: Cancer Research UK and the UK Longitudinal Linkage Collaboration (UK LLC).

The UK Longitudinal Linkage Collaboration

The UK LLC is an innovative project developing a new approach for linking well-established longitudinal studies to routine records. It's funded as part of the COVID-19 Longitudinal Health and Wellbeing National Core Study and operated by the Universities of Bristol and Edinburgh, in collaboration with SeRP UK, Swansea University, the University of Leicester and UCL.

The UK LLC hosts more than 20 studies with approximately 250,000 study participants. These studies bring exceptionally detailed and broad varieties of study data collected over many years and pandemic follow-up data. The data is held in a Trusted Research Environment where linked data from the studies taking part can be used in COVID-19 research across the UK.

Read the full announcement on the Alliance website.

Cancer Research UK

By joining the Alliance, Cancer Research UK will work in partnership with some of the UK’s leading health and research organisations to support research and development into the discovery, prevention, detection and treatment of cancer through use of vital health data.

As an Alliance member, CRUK - along with its innovation engine Cancer Research Horizons - will make information on datasets under their control available on the Gateway. The first such dataset is the OPTIMAM database (OMI-DB) which contains large numbers of mammography images collected from the National Breast Screen network - images that can be used to support research into the early detection of breast cancer.

Read the full announcement on the Alliance website and explore CRUK's Research Data Strategy to learn more about how they're maximising the benefit of research data to improve patient outcomes.

The UK Health Data Research Alliance

Established in 2019, the UK HDR Alliance is an independent partnership of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. There are now 71 members of the Alliance, all working collaboratively to help researchers address some of the most difficult and important health challenges facing the UK.


Data Access and Discovery webinar - August 2022
20 Jul 2022
Data Access and Discovery webinar - August 2022

This month we are running a slightly different (and extended) session as we'd like to spend some time hearing from you and discussing ideas about how we can improve the Gateway experience for all. So, join us in August for an interactive feedback style workshop!

This is your opportunity to learn more about the Gateway journey far, find out about new features and functionality and share your feedback and thoughts. There will also be a chance to ask questions to the Gateway team and get involved in open discussion.

There are a limited number of spaces available so please register using the link below to secure your spot - come along and help us improve the Gateway.

We hope to see you there!

Register here
.


Out now! The latest Gateway newsletter - July
13 Jul 2022
Out now! The latest Gateway newsletter - July

July's Gateway Data Discovery newsletter is now available. In this issue:

  • Learn how you can help us improve the Gateway by joining our upcoming interactive workshop - places limited so be quick
  • Find out what new datasets are available via the Gateway
  • Discover more about the impactful research generated by our Health Data Research Hubs

Read the July Gateway newsletter here.

Subscribe to our mailing list to receive this directly to your inbox.


New datasets published on the Gateway - June 2022
08 Jul 2022
New datasets published on the Gateway - June 2022

In June, seven new datasets were published on the Gateway, including COVID-19 A&E stats from the Health Informatics Centre and the Virus Watch cohort study by the Office of National Statistics.

SAIL Databank
  • Family Man (FMAN) - a dataset covering people involved in family court cases in England and Wales
Office for National Statistics
  • Virus Watch - a community cohort study of Covid-19 containing baseline demographics and clinical information, plus regular follow up data
Health Informatics Centre - University of Dundee
  • Unscheduled Care - GP out of hours data and unscheduled care data from the Adastra system (clinical patient management software) during COVID-19
  • SHARE - the Scottish Health Research Register and Biobank: A register of volunteers ages 11+ willing to help with NHS research projects
  • SAS (Scottish Ambulance Service) - data ON hypoglycemic events for the whole of Scotland
  • CRIS - a Tayside and Fife radiology dataset

Search and discover over 750 datasets currently listed on the Innovation Gateway.


Data Access and Discovery webinar recording - June 2022
17 Jun 2022
Data Access and Discovery webinar recording - June 2022

Our June Data Access and Discovery webinar was hosted by Head of Training at HDR UK, Rosie Wakeham. Rosie was joined by Heidi Seibold who spoke about reproducible data analysis and the first steps towards a gold standard.

A recording of the session is now available - take a look to find out about Heidi’s brilliant ‘research companion’ concept and her best tips and tools for staying digitally organised when it comes to the reproducibility pipeline.

Watch the June Data Access and Discovery webinar here.


June's Gateway newsletter now available
14 Jun 2022
June's Gateway newsletter now available

The June issue of the Gateway Data Discovery newsletter is out now. Find out about:

  • Our recent Data Access and Discovery webinar on reproducible data science, and other upcoming events
  • The Gateway collection of the month
  • How we celebrated two years of the Health Data Research Innovation Gateway

And more!

Read the June Gateway newsletter here.


Latest datasets listed on the Gateway - May 2022
06 Jun 2022
Latest datasets listed on the Gateway - May 2022

Eleven new datasets were added to the Gateway in May, including four from the Health Data Research Hub for Acute Care: Pioneer.

Born in Bradford
Health Informatics Centre - the University of Dundee
NIHR Nottingham Biomedical Research Centre
PIONEER

Search and discover over 750 datasets currently listed on the Innovation Gateway.


Did you know…?
27 May 2022
Did you know…?

To mark two years of the Health Data Research Innovation Gateway, we asked our team to share their best tips, trivia and general curiosities about the Gateway.

Here are seven things that you might not know about the Gateway:

  1. When viewing any dataset published on the Gateway, navigate to the ‘related resources’ tab to see publications and data uses linked to that particular dataset. For example, this COVID-19 Vaccination Status dataset from NHS Digital has 27 related resources.
  2. The initial Gateway specification was called the Discovery, Access Management and User Experience Portal, or DAMUX for short.
  3. Anyone can search the Gateway for datasets and other resources, but only registered users can request access to datasets, use advanced search functions like Cohort Discovery, create a Collection (see no. 6) and contribute to the Gateway Community Forum.
  4. Did you know that the Gateway Data Use Register contains lay summaries and public benefit statements? Here’s a great example. Plus, the complete register, or the results of a search, can also be downloaded as a CSV file.
  5. We have been recognising two years of the HDR Innovation Gateway all this week, but Gateway Day itself is 22 May. Why? It’s the date of our first release beyond MVP versioning (see no. 7).
  6. We use Collections to bring together Gateway resources around a particular topic, but did you know than anyone (as long as you are a registered user) can create a Collection? Collections can either be made private or public so you can share them more widely, or not. See all current Gateway Collections here.
  7. Our internal codenames for the Gateway MVP development were named after (Adrien-Marie) Legendre, Paul (the Octopus), (Ronald) Fischer and (Francis) Galton – giants in the data science world. We assign numbers to our Gateway release packages now (see no. 5 for the first one).

Contributors: Steph Parrott; Sean Muchenje; Chris Milner; Nada Karrar; Ruth Milne; and Susheel Varma.


The most viewed datasets on the Gateway to date
22 May 2022
The most viewed datasets on the Gateway to date

The Health Data Research Innovation Gateway was established in early 2020 to provide a common entry point to discover and request access to health datasets across the UK.

There are now over 750 datasets available to explore on the Gateway – here, we run through the top ten most viewed so far.

No. 10
  • Dataset: CPRD GOLD
  • Custodian: Clinical Practice Research Datalink
  • About: CPRD GOLD contains primary care data contributed by GP practices, including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice
  • Views: 892
No. 9
  • Dataset: Public Health Research Database (PHRD)
  • Custodian: Office for National Statistics
  • About: This database is a linked asset which includes 2011 Census for England and Wales linked to Mortality Data, Hospital Episode Statistics (HES), and GP Extraction Service (GPES) Data for Pandemic Planning and Research data. Data applicants can apply for these datasets individually or any combination of the current four
  • Views: 1090
No. 8
No. 7
  • Dataset: Welsh Demographic Service Dataset (WDSD)
  • Custodian: Secure Anonymised Information Linkage (SAIL) Databank
  • About: WDSS contains administrative information about individuals in Wales that use NHS services, replacing the NHS Wales Administrative Register (NHSAR) in 2009
  • Views: 1117
No. 6
  • Dataset: Patient Episode Dataset for Wales (PEDW)
  • Custodian: Secure Anonymised Information Linkage (SAIL) Databank
  • About: The PEDW database contains hospital admissions data for all NHS Wales inpatient and day case activity, including attendance, clinical information, diagnoses and operations performed
  • Views: 1230
No. 5
  • Dataset: National Neonatal Research Database (NNRD)
  • Custodian: Neonatal Data Analysis Unit, Imperial College London
  • About: The NNRD is a national resource holding real-world clinical data captured in the course of care on all admissions to NHS neonatal units in England, Wales, Scotland and the Isle of Man
  • Views: 1594
No. 4
  • Dataset: Trusted Research Environments for CVD-COVID-UK / COVID-IMPACT
  • Custodian: BHF Data Science Centre
  • About: Linkable health datasets in respective TREs in England, Scotland and Wales, including information on primary and secondary care, Covid-19 lab tests and vaccinations, deaths, critical care, prescribing/dispensing, cardiovascular and stroke audits, maternity services and mental health
  • Views: 1600
No. 3
  • Dataset: ISARIC4C COVID-19 Clinical Information Network (CO-CIN)
  • Custodian: International Severe Acute Respiratory Infection Consortium: Coronavirus Clinical Characterisation Consortium
  • About: ISARIC4C CO-CIN contains data and samples collected from patients of all ages requiring admission to hospital with covid-19, and patients in hospital subsequently diagnosed with covid-19 in England, Scotland and Wales
  • Views: 1608
No. 2
  • Dataset: COVID-19 SARI-Watch (formerly CHESS)
  • Custodian: NHS Digital
  • About: Contains data related to demographic, risk factor, treatment, and outcome information for patients admitted to hospital with a confirmed Covid-19 diagnosis, as recorded via the Covid-19 Severe Acute Respiratory Infection (SARI) watch surveillance system.
  • Views: 1709
No. 1
  • Dataset: COVID-19 Symptom Tracker Dataset (CVST)
  • Custodian: Secure Anonymised Information Linkage (SAIL) Databank
  • About: The COVID Symptom Tracker was designed by doctors and scientists at King's College London and Guys and St Thomas’ Hospital, working in partnership with ZOE Global – a health science company. Data collected through the app underpins a huge amount of scientific research and insights into Covid-19, and it continues to be a valuable resource for rapidly and consistently advancing our understanding and public knowledge about the coronavirus pandemic.
  • Views: 5576

Search, discover and request access to hundreds of datasets on the Health Data Research Innovation Gateway.


New datasets added to the Gateway – April 2022
16 May 2022
New datasets added to the Gateway – April 2022

Three new datasets were added to the Gateway in April, including two from Alliance member: NIHR Nottingham Biomedical Research Centre.

NIHR Nottingham Biomedical Research Centre

NIHR Nottingham Biomedical Research Centre currently have six datasets listed on the Gateway. View them all here.

UCLEB Consortium

Uniting data to support mental health research
11 May 2022
Uniting data to support mental health research

To recognise Mental Health Awareness Week we’re featuring some of the mental health datasets available to discover and request access to via the Health Data Research Innovation Gateway.

Mental Health Awareness Week is hosted by the Mental Health Foundation and runs from 9-15 May 2022. It’s one of the biggest awareness weeks across the UK and aims to promote, educate and drive change to support good mental health for all. The theme this year is loneliness.

Poor mental health, including loneliness, can affect anyone at any time in their lives, and research has shown that people with a mental health problem are more likely to experience a preventative physical health problem like heart disease (and vice versa).

Almost 3m people in England accessed NHS-funded mental health services between April 2020 and March 2021, and whilst the long-term impact of Covid-19 is unknown, the demand for mental health support services is strikingly clear. Yet mental health research in the UK is persistently underfunded compared to other areas of health science.

However, the UK has some of the best population-level mental health data in the world - bringing it together and making it easier to find means that scientists, clinicians and other healthcare professionals can better coordinate their research activities, progressing our understanding of mental health, improving patient outcomes, and reducing pressure on health care at an accelerated pace.

Below, we highlight a few of the mental health datasets listed on the Gateway:

Funded as part of the COVID-19 Longitudinal Health and Wellbeing National Core Study, the UK Longitudinal Linkage Collaboration (UK LLC) project links data from well-established longitudinal studies to routine records which can be accessed securely to help researchers and analysts work to improve health and wellbeing throughout and beyond the coronavirus pandemic.

  • DATAMIND – HDRUK’s Hub for Mental Health Informatics Research Development

The DATAMIND Hub is transforming mental health research in the UK by providing a central, integrated data infrastructure with findable, accessible, interoperable, and reusable (FAIR) mental health data sets. In partnership with charity MQ: Transforming Mental Health, DATAMIND support the development of the public’s involvement in mental health research to ensure that valuable contributions are included from those with lived experience.

Otherwise known as Children of the 90s, this cohort study recruited 15,000 pregnant women in the early 1990s and has followed the mental and physical health of the women and their children for nearly three decades. It has multiple datasets spanning 30 years of data collection using questionnaires, clinics and other sources.

Discover lots more mental health-related datasets and other resources available on the Gateway in our Mental Health Collection, including data from CPRD, Discover Now (HDR UK’s Hub for Real World Evidence), Public Health Scotland and over 30 datasets from NHS Digital.


What do you think about the Gateway?
06 May 2022
What do you think about the Gateway?

We are collecting feedback on the Health Data Research Innovation Gateway so that we can improve the experience for all.

Share your thoughts by taking part in our short survey. It shouldn’t take any longer than 3 minutes to complete – thank you!

HDRUK Innovation Gateway survey

Please feel free to share the survey link.


The latest Gateway newsletter - out now
04 May 2022
The latest Gateway newsletter - out now

The May issue of the Gateway Data Discovery newsletter is now available to read. Find out about:

  • Our recent Data Access and Discovery webinar - A Forest Through the TREs - and upcoming events
  • The Gateway collection of the month for May
  • All the newest datasets and development updates
  • And more!

Read the May Gateway newsletter here.


A Forest Through the TREs - webinar recording
29 Apr 2022
A Forest Through the TREs - webinar recording

April’s Data Access and Discovery event - A Forest Through the TREs - was hosted in partnership with NHS Transformation Directorate (NHSTD) and highlighted how recent developments around the use of Trusted Research Environments is ensuring safe and secure access to health data for research. The session was chaired by Tim Hubbard, Professor of Bioinformatics at King’s College London.

Nicola Brassington (NHSTD) opened the webinar with an introduction to NHSTD’s forthcoming policy on the use of Trusted Research Environments within the NHS. This was followed by a discussion and Q&A session with panel members:

  • Ben Goldacre (Director of the Bennett Institute)
  • Debbie Keatley (HDR UK Public Advisory Board member)
  • Bradley Quinn (Health Innovation Manchester)
  • Susheel Varma (CTO, HDR UK)

If you were unable to make the session or would like to watch it again, the webinar recording and accompanying slides are now available to view on the Gateway community forum, where you are also welcome to the discussion.

We hope to see you at the next Data Access and Discovery event on Friday 10 June - further details to follow. Register here to stay updated.

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Throughout the COVID-19 pandemic, HDR UK has championed and led the use of Trusted Research Environments (TREs) to enable crucial research to support the response across all four nations – learn more about this work below.

Trusted Research Environments
- how we are committed to enabling the trustworthy use of health data for research.

(Image by Steven Kamenar, Unsplash)


Latest Gateway datasets: March 2022
14 Apr 2022
Latest Gateway datasets: March 2022

In March, 28 new datasets were added to the Gateway, including the Fenland Study from the University of Cambridge which looks at the interaction between environmental and genetic factors in determining obesity, type 2 diabetes, and related metabolic disorders.

MRC Epidemiology Unit – the University of Cambridge

QResearch is a large, consolidated database derived from the anonymised health records of over 35 million patients with longitudinal data tracking back over 30 years. They are one of our newest Alliance members and recently added 15 datasets to the Gateway – view them via this collection page.

NIHR Nottingham Biomedical Research Centre

Clinical Practice Research Datalink (CPRD)

Explore all CPRD datasets listed on the Gateway, here.

PIONEER

Learn more about the HDR UK Pioneer Hub, including further datasets and other resources via their Gateway Collection page.


Data Access and Discovery Webinar - April 2022
08 Apr 2022
Data Access and Discovery Webinar - April 2022

The next Data Access and Discovery webinar is taking place 21 April 2022 – extended to 60 mins to accommodate for several guest speakers and to ensure plenty time for questions and conversation.

This month we are hosting in partnership with NHS Transformation Directorate (NHS TD) to demonstrate recent developments around the use of Trusted Research Environments as one of the key components for the trustworthy access to health data for research.

Register now
.

Nicola Brassington, Deputy Director of Data & Analytics at NHS TD will lead the event with an introduction to their forthcoming policy on the use of Trusted Research Environments (also known as Secure Data Environments) within the NHS.

Ben Goldacre, Bennett Professor of Evidence-Based Medicine at the University of Oxford and Director of the Bennett Institute for Applied Data Science, will then speak about OpenSafely, the benefits of TREs and public engagement. His much broader recent review into better and safer use of health data for research and analysis for the benefit of patients and healthcare sector can be accessed here.

The panel also includes:

The panel will be chaired by Tim Hubbard, Professor of Bioinformatics at King’s College London, Head of Genome Analysis at Genomics England; and co-author of the paper: Principles and Best Practices, Towards TRE Ecosystems.

Learn more about how HDR UK are leading and championing the use of Trusted Research Environments (TREs), here.


HDR UK submits QQR to core funders
15 Mar 2022
HDR UK submits QQR to core funders

Health Data Research UK (HDR UK) submitted its Quinquennial Review to core funders on 4 February 2022.

The submission sets out the progress achieved by the Institute since its establishment in 2018 and outlines its vision and strategy for the next five years (from April 2023 to March 2028).

For the Gateway this means increasing discovery and improving access to health data at scale to support an ecosystem of integrated data resources and technology services that’s highly valued by the communities HDR UK serves.

An overview of the submission is shared here: Overview – HDR UK Quinquennial Review.

The proposals are now subject to peer review as part of the Quinquennial process. Further details of our proposed activities for the next five years and the review process are provided on the HDR UK website.


Latest Gateway Datasets: February 2022
08 Mar 2022
Latest Gateway Datasets: February 2022

In February, 14 new datasets were to the Gateway from three HDR UK Hubs – Breathe, Pioneer and Insight – and Alliance member, CPRD. Click on the links below to discovery more about each new dataset.

BREATHE:

Learn more about the HDR UK Breathe Hub, including further datasets and other resources via their Gateway Collection page.

PIONEER:

Explore the HDR UK Pioneer Hub, including further datasets and other resources via their Gateway Collection page.

INSIGHT:

Learn more about the HDR UK Insight Hub, including further datasets and other resources via their Gateway Collection page.

CPRD:

Explore all CPRD datasets listed on the Gateway, here.


Data Access and Discovery webinar recording
21 Feb 2022
Data Access and Discovery webinar recording

Earlier this month we held our first Data Access and Discovery event on data use registers.

Nada Karrar, HDR UK’s Data Access Registers Project Manager, spoke about our work so far on developing a set of standards for data use registers to help improve transparency in health data research.

We also heard from two guest speakers - Angela Coulter (Chair of HDR UK Public Advisory Board) and Victoria Yorke-Edwards (Research Fellow at MRC Clinical Trials Unit UCL) - both of whom were part of the wider community that helped us develop our recommendations for a data use register standard.

In case you missed the session or would like to watch again, you can access a recording of the webinar on the Gateway community forum, where you can also continue the conversation.

We hope to see you at the next Data Access and Discovery event on Thursday 21 April - further details to follow.


Women in Science Day - join our online discussion
09 Feb 2022
Women in Science Day - join our online discussion

Friday 11 February 2022 is the 7th International Day of Women and Girls in Science which recognises the vital role women and girls play in science and technology.

Although huge progress has been made in recent years, women around the world are still significantly under-represented in science - only 33% of all researchers are women, and in disciplines like data science and artificial intelligence their representation falls even further to 26%. Women are also typically given smaller research grants compared to their male colleagues, and their work is reported less frequently in high-profile journals.

The International Day of Women and Girls in Science is organised by UNESCO and UN Women with the aim of promoting full and equal access to participation in science for all women and girls. We are marking the day by holding an online discussion event on our community forum and we would like to invite you to join the conversation - full details below. Everyone welcome!

What is happening?

We, HDR UK’s Innovation Gateway, are hosting an online discussion especially for the International Day of Women and Girls in Science.

Where?

The interactive event is taking place on our community forum, here. You’ll need to be signed into the Gateway to participate. Not signed up? No problem - it's quick and easy to join the Gateway community!

When?

The discussion is happening this Friday 11 February 2022, on Women in Science Day (times below).

Why?

By sharing personal stories, motivations and recommendations we can celebrate and support all women working in science as well as strengthen our understanding of the career challenges they face working in male-dominated environments.

How will it work?

On Friday, we’ll post three topics for discussion - at 10am, 12pm and 2pm GMT - in the Gateway community forum under the category Women in Science.

  • Topic 1 will look at career motivations (10am)
  • Topic 2 will focus on the dreaded imposter syndrome (12pm)
  • Topic 3 will consider actions for the future (2pm)

We'll be sure to add some prompts and thinking points to get things going!

Each topic will be shared on our Twitter feed once live, although you can also navigate to them here as well.

Although we’re introducing discussion topics at certain times throughout the day, you are welcome to join the conversation at any time. And don’t forget, you can always create your own thread to add more topics to the conversation!

Our community guidelines, terms of service and privacy notice can be found on the Gateway forum about page.

Need some inspiration?

In this article, we speak to three women scientists from the HDR UK community about their experiences in health data research, and what we as a data science community can do to improve the outlook for both our women scientists, and the public.

Be sure to follow us @HDR_UK for news and updates throughout the day too.


The superpower of heath data on World Cancer Day
04 Feb 2022
The superpower of heath data on World Cancer Day

This World Cancer Day, explore a selection of high-quality DATA-CAN datasets available to researchers via the Gateway.

World Cancer Day is held every year on 4 February to raise global awareness of cancer and to support equitable access to its prevention, diagnosis, treatment and care for all.

Even though we know more about cancer than ever before - and two thirds of all cancer cases can now be prevented or cured through early diagnosis and proper treatment - 10 million people still died from the disease in 2020. We can continue to save and radically improve the lives of cancer patients by unlocking the power of the UK's health data for cancer research.

DATA-CAN is Health Data Research UK’s hub for cancer. It aims to make health data more accessible for cancer researchers and health professionals, to help improve cancer services and patient outcomes. Data that’s more discoverable and easier to access means that it can be used more effectively to help drive the development of new cancer treatments, therapies and diagnostic services and improve cancer survival rates.

A selection of DATA-CAN datasets can be explored on the Gateway, including real-time data on the effects of Covid-19 on cancer services and a dataset on childhood kidney cancers from Great Ormond Street Hospital. Click on the link below to explore the complete collection of DATA-CAN datasets, and other resources, listed on the Gateway.

DATA-CAN datasets on on the Gateway.

And to take a look at all cancer datasets listed on the Gateway, please browse our cancer themed collection here.


Data Access and Discovery Webinar - February 2022
28 Jan 2022
Data Access and Discovery Webinar - February 2022

Learn more about the Health Data Research Innovation Gateway (the Gateway) at our new for 2022 Data Access and Discovery event.

Thursday 10 February 2022 11:00 - 11:45 GMT

Discover more about the development of the Gateway, the latest features and functionality, and how it is intrinsic to the realisation of our mission to unite the UK’s health data to enable discoveries that improve people’s lives.

Register now.

Our new bi-monthly Data Access and Discover series replaces our previous monthly Open-Door sessions. The change enables us to cover a broader range of topics and talking points that are open and accessible to as many people as possible. And of course, there will be plenty of opportunity for questions and discussion during the event itself. We hope to see you there!


Gateway Open Door and Q&A: November
01 Nov 2021
Gateway Open Door and Q&A: November

Come join us at this month's virtual Open Door session on the Health Data Research Innovation Gateway (the 'Gateway')!

Taking place on Thursday 11 November, 14:00-14:45

REGISTER NOW

This is your opportunity to learn more about the development of the Gateway, the latest features and functionality, and how it is intrinsic to the realisation of our mission to unite the UK’s health data to enable discoveries that improve people’s lives.

Following the development and recent launch of our Data Utility Wizard, we are really excited to be joined at our next session by Flatiron Health, who aim “to improve lives by learning from the experience of every cancer patient.” Flatiron worked with the HDRUK team to provide early feedback on the Data Utility Wizard; in this session, Flatiron will share reflections on that collaboration, as well as learnings from their own work on data quality.

At the Open Door, we will be demonstrating the recently launched Data Utility Tool and seeking initial thoughts, feedback and input to guide its future development.

Join us to find out more and get involved in the open discussion.

#HealthDataGateway

Please register to receive the links to join the webinar closer to the time of the meeting.

REGISTER NOW


Real-world data for real-world evidence and real patient benefit
01 Nov 2021
Real-world data for real-world evidence and real patient benefit

Click here to find out how the National Neonatal Research Database (NNRD) is working with Health Data Research UK.


New Data Utility Wizard Tool launched
11 Oct 2021
New Data Utility Wizard Tool launched

Our new Data Utility Wizard tool has just launched on the Gateway, which aims to help refine your search to only datasets that meet your data utility requirements- based on the Data Utility Framework we previously developed.

We'd encourage you to try out the tool which can be accessed via the ‘advanced search’ button below the search bar on the homepage. And we'd love any feedback on the tool which you can share here- https://discourse.healthdataga...


Trusted Research Environments (TREs)
27 Sep 2021
Trusted Research Environments (TREs)

Following on from our Gateway Open Door September event with the Office of National Statistics on Trusted Research Environments, we have now created a resource hub on the Health Data Research UK site around TREs which can be accessed here. The page contains the recording of the Open Door event and links to other relevant resources. We also are aiming to develop a FAQ document around TREs- if you have any questions you'd like answering then please add them to the Gateway community forum here.

HDR UK's new virtual learning platform, HDR UK Futures, also has recently added a video on how to work in a TRE- accessible once you register for free here.


Monthly Open Door- October
15 Sep 2021
Monthly Open Door- October

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month's we will be joined by Imperial's Neonatal Medicine Research team who will be talking about the National Neonatal Research Database (NNRD). The NNRD is a national resource holding real-world clinical data captured in the course of care on all admissions to NHS neonatal units in England, Wales, Scotland and the Isle of Man. At present, there is information on around one million babies and 10 million days of care in the NNRD. The team will be introducing the NNRD, why it was set up and how you can access this database via the Gateway.

You can register here for the event on the 14th October at 2pm.


New Data Access Process functionality released
07 Sep 2021
New Data Access Process functionality released

We have recently released two new functionalities as part of the Gateway Data Access Request process that we hope will improve the experience for users.

  • The Amend functionality enables researchers to submit amendments to previously approved applications (researchers can now re-open a previously approved application and submit specific updates like adding a new dataset or a new collaborator).
  • The Contextual messaging functionality enables exchange of messages between custodian and researchers. This facilitates communication between researchers and data custodians, making it easier to complete a data access request form.

You can find an overview of how the Gateway Data Access process works here. As always do let us know any feedback on the new functionality at Gateway@hdruk.ac.uk


Monthly Open Door- September
19 Aug 2021
Monthly Open Door- September

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

We're back after a summer break and this month we'll be talking all things Trusted Research Environments (TREs). We’re excited to be joined by the Office for National Statistics (ONS) who will be talking about their TRE- the ONS Secure Research Service and the research it has facilitated. We’d love to hear any aspects or questions you have about TREs you’d like us to cover in this session. Please do get in touch at Gateway@hdruk.ac.uk.

You can register here for the event on the 9th September at 11am.


COG-UK dataset now on the Gateway
08 Jul 2021
COG-UK dataset now on the Gateway

The COVID-19 Genomics UK (COG-UK) consortium was established in response to the COVID-19 pandemic in March 2020 and pools the world leading knowledge and expertise in genomics of the four UK Public Health Agencies, multiple regional University hubs, and large sequencing centres such as the Wellcome Sanger Institute. COG-UK have now listed their dataset on the Gateway, which contains over 20K SARS-CoV-2 viral genome sequences. Users can request access to the dataset via the Gateway.

COG-UK have also joined the UK Health Data Research Alliance- you can find out more in this piece.


Monthly Open Door- July
11 Jun 2021
Monthly Open Door- July

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month we'll be joined by Carole Morris, Head of the Electronic Data Research and Innovation Service (eDRIS) Public Health Scotland who will be discussing the work Public Health Scotland do as data custodians, how they use the national safe haven and how they interact with the Gateway.

You can register here for the event on the 8th July at 3pm.


First synthetic datasets now on the Gateway
11 Jun 2021
First synthetic datasets now on the Gateway

The first synthetic datasets are now listed on the Gateway!

Synthetic datasets are compromised of data generated via computers, instead of real-world patient data. Well-created synthetic data establishes a risk-free environment for health care algorithm development and experimentation and is of particular use in rare diseases, where real data may be in short supply, or to replicate disease in less common patient demographics.

Check out the synthetic dataset from our PIONEER hub on hypertrophic cardiomyopathy here and cardiovascular and COVID-19 synthetic datasets from CPRD here and here respectively.


Our new look homepage!
17 May 2021
Our new look homepage!

We're excited today to launch our fresh new homepage and navigation! We hope this will improve the general usability of the site and also make it more engaging. One of the new features of the homepage is specific landing pages for each user of the site- check out the pages for researchers and innovators, data custodians and public and patients.

We'd like to thanks all the various users that were involved in workshops helping to co-create and develop the new homepage, the feedback and ideas were invaluable.

If you have any feedback on our new homepage and info pages you can comment here.


Monthly Open Door event-June
13 May 2021
Monthly Open Door event-June

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month we'll be celebrating one year of the Gateway, discussing what we've achieved so far, unveiling our new homepage and also demo-ing our data access request process with its new 'cloning' application feature.

You can register here for the event on the 10th June at 3pm.


Power up your Data Science Skills in our Virtual Learning Environment
30 Apr 2021
Power up your Data Science Skills in our Virtual Learning Environment

HDR UK has just launched the Virtual Learning Environment - a free library of bitesize videos that will build up in the coming weeks and months to cover the essential topics you need to know to advance your skills.

The videos will all be delivered by experts from academia, industry and the NHS and are designed to be followed at your own pace and learning pathway, so you can pick and choose the data science topics most relevant to you.

Find out more from the introductory web page then simply register to create your own personalised account.


New Cohort Discovery Tool launches on the Gateway
27 Apr 2021
New Cohort Discovery Tool launches on the Gateway

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. This new functionality co-developed by HDR UK, University of Nottingham, BC Platforms (BCP), PA Consulting and the CO-CONNECT project allows users to search by specific cohorts or demographic groups. For example, women in England between the ages of 18 and 30, with asthma that do not smoke.

This adds an extra layer and dimension to data discovery provided by the Gateway, enhancing the utility of a number of these datasets even further; and enabling new levels of analysis and insights that will ultimately feed through to the front line of improved patient care.

You can read more in our press release here and instructions on how to access the tool are here.


CO-CONNECT: Linking COVID-19 immunity data blog
06 Apr 2021
CO-CONNECT: Linking COVID-19 immunity data blog

Check out our new blog all about CO-CONNECT who are working in partnership with the Gateway to pave the way for a standardised approach to collection, storage and discovery of health datasets more widely. You can also find out more about CO-CONNECT and the new Gateway Cohort Discovery Tool at our Open Door session this Thursday 8th April at 3pm- you can register here.


One year of the Gateway
01 Apr 2021
One year of the Gateway

Working with our stakeholders, we have made significant progress over the last year developing the Gateway to support our vision to make health data easier to find, quicker to access and safer to use by innovators and researchers. And today we have reached a significant milestone on that journey - 1,000 registered users.

So much has changed over the past 12 months and like many organisations we rapidly adapted the Gateway to support the scientific community's response to COVID-19 whilst ensuring it continued to support HDR UK's other priority research areas. Below we share what's been achieved over the last 12 months. Looking forward, we're excited to continue working with researchers, innovators, data custodians and the public to build on what we've delivered to date and continue to make the Gateway a success.


Monthly Open Door event- May
01 Apr 2021
Monthly Open Door event- May

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month we’ll be joined by HDR UK’s Data and Connectivity National Core Study (NCS) team. Data and Connectivity NCS - which is led by HDR UK and in partnership with ONS – connects UK health data to support and accelerate research on COVID-19. The programme supports the five National Core Studies established by the government to answer key research questions on COVID, by enabling streamlined data access and analysis. They will be discussing how researchers conducting COVID-19 research use the Gateway to access data, add projects and curate their outputs.

You can register here for the session, May 13th at 3pm.


More key COVID-19 vaccine datasets now listed
25 Mar 2021
More key COVID-19 vaccine datasets now listed

The Covid-19 Vaccination Status and Covid-19 Adverse Reaction datasets are now listed on the Gateway and available for researchers to request access to. These datasets are important assets in supporting vital research into vaccine effectiveness and identifying potential risk factors associated with the vaccines. They are hosted in the NHS Digital Trusted Research environment (TRE), a new service providing researchers with key data on a secure platform.

The datasets are also linked- enabling researchers to analyse and model the data against other key metrics, to answer key questions about vaccine effectiveness including: how long vaccine induced protection lasts, what are the social, behavioural and economic factors influencing vaccine uptake and how any potential changes in the virus may impact the effectiveness of vaccines.


Monthly Open Door event- 8th April
19 Mar 2021
Monthly Open Door event- 8th April

Come and join us for Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month we will be demonstrating an innovative and exciting new Gateway feature - Cohort Discovery. Cohort Discovery will allow researchers to search across many datasets to find those that include groups, or cohorts, of patients with specific, researcher defined characteristics that they require to support their research. For example, a researcher could use the Cohort Discovery functionality to look for datasets that contains patients that don't smoke aged between 18-30 and who live in England. This new feature will save many researchers time by helping them determine whether a dataset will be useful for their research.

You can register here for the session, April 8th at 3pm.


Data Access Registers workshop- researchers needed!
19 Mar 2021
Data Access Registers workshop- researchers needed!

We are looking for researchers to participate in a workshop to discuss standards for Data Access Registers on 26th March 9.30am-10.00am.

Data custodians’ Data Access Registers provide public information about of how data are used including the types of research projects using health data, the names of organisations accessing the data and dates of approval.

In this meeting we will explore the value of ‘Data Access Registers’ in improving transparency of how health data are used for research and will seek input from experts on how we can drive public sharing of information in a standardised way.

The outcome from this workshop will inform work of the UK Health Data Research Alliance and will also help improve the HDR UK Public Advisory Board’s understanding. The aim is to make it easier for researchers and the public to understand how data are used and what insights derived from the use of health data.

Please email ukalliance@hdruk.ac.uk if you'd like to take part.


New resources for Understanding Health Data Access
15 Mar 2021
New resources for Understanding Health Data Access

A new series of short films and website content has been published to support researchers and clinicians who wish to access health and care data for uses beyond treating individuals. The Understanding Health Data Access (UHDA) project is a suite of short films and written resources designed to improve accessible, introductory information about the rules and processes governing access to health data. The project was funded by the Health Foundation and delivered by Healthcare Quality Improvement Partnership (HQIP).

You can find the resources here on the Gateway- we hope they will be useful for a range of Gateway users.


COVID-19 vaccine data listed and available to request
01 Mar 2021
COVID-19 vaccine data listed and available to request

While the total number of people vaccinated for COVID-19 is widely reported, there are many important questions about the real-world effectiveness of the vaccines on different population groups, their impact of the disease transmission and how vaccines will affect the course of the pandemic that require access to crucial real-world data on vaccine delivery, infections and the health service response to enable detailed research to take place.

As of today, researchers can now start to work on answering these questions by requesting access to two critical datasets through the Gateway- the England COVID-19 Immunisations dataset and the Welsh COVID-19 Vaccination Dataset.

England's dataset is available through the Office for National Statistics Secure Research Service and contains de-identified record-level data of people who have received a vaccination for COVID-19, including details of the type of vaccine and date of vaccination. The Welsh Dataset covers similar data for Wales and allows vaccine data to be linked to the other key health and administrative datasets available through the SAIL Databank. These datasets are updated daily and allow researchers access the latest available information. Approvals to access the datasets will be based on the “Five Safes” framework to ensure responsible and trustworthy uses of health data.


NIHR Researcher Road Show event- find out more about the Gateway
23 Feb 2021
NIHR Researcher Road Show event- find out more about the Gateway

The Gateway team will be presenting at the next NIHR Researcher Road Show organised by the NIHR Research Design Service. The event's focus is 'Using health and social care datasets in research: Practical advice to support your research journey.' It is aimed at all those seeking practical guidance on how to find, access and gain approvals to use health datasets, including early career researchers.

The Gateway team will be speaking on the second day, introducing the Gateway's journey so far and we also will be running a working session on data discovery.

More information on the event and the agenda can be found here. Registration is free and you can sign up for the event via this link.


Join our new Gateway Development and Improvement Group!
23 Feb 2021
Join our new Gateway Development and Improvement Group!

The Gateway is constantly in development and it is key for us to have input and feedback from a broad range of audiences to ensure the site works and is engaging for all potential users. We're now putting together a 'Gateway Development and Improvement Group' that will involve members in our design workshops and sessions on new and existing Gateway features more regularly, and allow them opportunities to give feedback on our prototypes via our community forum.

We're currently recruiting members for the group from a range of backgrounds and audiences. As a rough guide we expect members to be attending 2-3 sessions a year and we hope being part of the group will provide an interesting insight into the design and development processes for the Gateway and helping to shape its future. No previous experience needed!

If you're interested please get in touch with our Gateway Content and Community Lead- Vicky at vicky.hellon@hdruk.ac.uk who can provide more info and sign you up to the group.

Photo by Hannah Busing on Unsplash


A spotlight on UK Biobank Datasets
22 Feb 2021
A spotlight on UK Biobank Datasets

As a member of the Health Data Research Alliance, UK Biobank has partnered with HDR UK since 2018. This month, UK Biobank listed several subsets of the Biobank dataset on the Gateway.

Check out our blog here shining a spotlight on UK Biobank and discover their datasets on the Gateway here.


Monthly Open Door- 11th March
16 Feb 2021
Monthly Open Door- 11th March

Come and join us for Health Data Research Innovation Gateway monthly open door!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month will be a ‘takeover’ by the BHF Data Science centre, a partnership between Health Data Research UK (HDR UK) and the British Heart Foundation (BHF). The team will be introducing the centre and what they have been up to since they launched in January 2020. They will also be taking us through how they use the Gateway and their new Trusted Research Environment with linkable datasets, which is now accessible to approved researchers who are members of the BHF Data Science Centre's CVD-COVID-UK consortium.

You can register here for the session, March 11th at 9am GMT.


New Gateway Newsletter
04 Feb 2021
New Gateway Newsletter

We have now launched a new monthly newsletter to keep you updated on all things Innovation Gateway! We'll be featuring stories on new datasets, content, collections and new features developed for users alongside general updates. You can view February's newsletter here.

Since the Innovation Gateway launched in June 2020 (following a Feb launch of the minimum viable product), nearly 800 researchers, innovators and beyond have registered to use the platform, and in the last month alone, there has been nearly 14,000 searches for datasets. A big thank you to everyone using the Gateway and to those that have helped us develop it so far.

Click here to subscribe to the new mailing list.

Photo by erica steeves on Unsplash


Improvement in Metadata quality on the Gateway
26 Jan 2021
Improvement in Metadata quality on the Gateway

One of our main aims of the Gateway is to ensure datasets and related resources are discoverable and accessible for researchers and innovators. A key part of this is the dataset metadata, which is the information available about a dataset. This information can help users understand whether a dataset will be of use to them without them having to see the data itself.

The more metadata that is provided about a dataset and the more accurate it is will make it easier for a user to decide whether it would be of use to their work and whether they would be eligible to access the dataset. To help users easily see the quality of a dataset’s metadata, a metadata richness score is calculated for each dataset record on the Gateway and displayed on the Gateway as Platinum, Gold, Silver, Bronze or Not rated.

The Metadata quality is calculated across four categories:

● Completeness Percent

● Weighted Completeness Percent

● Error Percent

● Weighted Error Percent

Together they produce a Weighted Quality Score and from that a quality rating is applied. You can see the rating in the top right of individual dataset pages or across datasets here.

We're always working closely with data custodians to continue to improve the quality of the metadata for datasets listed on the Gateway. We've recently seen an increase in the ratings quality with the 561 datasets:

● 94 listed as Platinum

● 38 listed as Gold

● 41 listed as Silver

● 219 listed as Bronze

● 169 currently not rated

Photo by Chad Greiter on Unsplash


Salford Lung Study industry dataset now listed
22 Jan 2021
Salford Lung Study industry dataset now listed

We're excited to announce the Salford Lung Study dataset is now listed on the Gateway. This marks the first dataset from industry to be available on the Gateway.

The Salford Lung Study of patients with asthma and chronic obstructive pulmonary disease (COPD) is considered the first of its kind globally – a large, prospective, real-world trial conducted across a patient population within a single geographical setting. The study combines the robust scientific methodology of a Randomised Controlled Trial (RCT) with the benefits of observing real patients in a real setting. This has led to the generation of a unique and scientifically important dataset.

BREATHE (the Health Data Research Hub for Respiratory Health) has partnered with GSK to enable access to the data, paving the way for new research. More info can be found in our press release here.

Gateway users can request access to the dataset here. For more information about requesting access to any datasets listed on the Gateway, please see our how to video.

Photo by Nino Liverani on Unsplash


New Data Access Request Form
02 Jan 2021
New Data Access Request Form

A new version of the data access request form has launched for the National Core Studies datasets in the Innovation Gateway. The new form incorporates the ONS's 'Five Safes' framework that protects confidentiality at all times when data is made available for research. There is also now a messaging system which helps connect the researcher/innovator and the data custodian with any queries on either side, ensuring for a communicative and collaborative data request process. We will be rolling out the new form for other datasets in the Gateway in the near future.


Monthly Open Door- 11th February
01 Jan 2021
Monthly Open Door- 11th February

Come and join us for Health Data Research Innovation Gateway monthly drop-in!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month we will be giving a demo of our new feedback process and also sharing preliminary designs for our new homepage, we'd love your input. You can register here for the session, February 11th at 9am GMT.

The Gateway team


New persistent identifiers for datasets on the Innovation Gateway
17 Dec 2020
New persistent identifiers for datasets on the Innovation Gateway

We have rolled out persistent identifiers (aka unique ID numbers) for all datasets on the Gateway (currently over 500). This will allow easier identification of which health datasets contribute to discoveries by allowing the dataset to be referenced in publications- establishing data as a first-class research object while providing credit to the people who made their data available. This also helps to increase transparency of how people’s health data is used and is an important mechanism for identifying the public and patient impact of using health data. As well as citing ID numbers for datasets, it is also important (and required by HDR UK researchers) to quote Use My Data’s data citation where relevant, to acknowledge the role of patients and the public in health data research: “This work uses data provided by patients and collected by the NHS as part of their care and support”.

Photo by Nick Hillier


Transforming the usefulness of data
16 Dec 2020
Transforming the usefulness of data

Health Data Research UK have developed the data utility evaluation framework to help measure the usefulness of data. The framework looks at data across multiple dimensions in 5 categories: from accuracy to coverage to technical quality. The framework will allow researchers to find useful data and support funders in knowing where best to invest to help support infrastructure and health data research. See this in action in the 'data utility' tab on datasets within the gateway.

This video explains in simple terms what the data utility evaluation framework is and why it was needed.


New process for tracking feedback
15 Dec 2020
New process for tracking feedback

We now have a new transparent process for collecting and tracking user feedback about the Innovation Gateway or any requests for new features.

We are entering and tracking feedback from our community forum or demos here, allowing everyone to see all current requests, their prioritisation and progress. See here for more info about this process and how it will work.

If you'd like to submit any feedback please do so via our community forum. We really value your input!


Photo by Patrick Fore on Unsplash


Take part in our Data Standards and Usage Survey
10 Dec 2020
Take part in our Data Standards and Usage Survey

Earlier this year, we sent a survey to a number of groups including those from the HDR UK Alliance and Data Officer Groups. This outlined the data models and standards which they support within their organisations. Now, we have developed a survey to target users and which data standards they would like to be seen or is required for them to conduct their research.

This is important because it will provide us insight to which data standards data custodians should be implementing and what information users need within this landscape. This will help increase the speed of which research can be done within health data domain therefore increasing the quantity of valuable research occurring in this space.

We'd therefore really appreciate you taking part in this survey. It should take less than 5 minutes and will close at the end of January.

Photo by Christin Hume on Unsplash


Check out our new video
10 Dec 2020
Check out our new video

Find out more about the Innovation Gateway and why we created it by watching this short video.


Monthly open-door session - Tuesday 15 December
10 Dec 2020
Monthly open-door session - Tuesday 15 December

Come and join us for Health Data Research Innovation Gateway monthly drop-in!

This is your opportunity to learn more about the development of the Innovation Gateway, the latest features and functionality, and how it is intrinsic to the realisation of Health Data Research UK’s mission to unite the UK’s Health data to enable discoveries that improve people’s lives.

This month will focus on the new data access request form. We will do a live demo with two researchers collaborating on a data access request form and one data custodian responding to queries and interacting with the form and researchers.

Join us to find out more, ask your own questions, and provide feedback.

The Gateway team


National Core Studies Collections now live
16 Nov 2020
National Core Studies Collections now live

As with so many other aspects of society, the pandemic has, of course, changed so much. The timely and trustworthy access to and use of health, social and care data has underpinned the UK’s response to the COVID-19 pandemic. HDR UK’s work to support the response to tackle COVID-19 has continued apace through our leadership of the “Data and Connectivity” National Core Study; and we have now also added helpful Collections for these studies onto our Innovation Gateway.

Photo by Louis Reed


Key milestone of 500 datasets reached
14 Oct 2020
Key milestone of 500 datasets reached

Reaching 500 datasets is a key milestone, not only for Health Data Research UK but also for the wider health research community we represent and support – across academia, industry and healthcare . Indeed, this milestone has been reached in an incredibly short window, with 90 additional datasets added since launch in January 2020.

You can find out more details about this milestone here.



Health Data Research Hubs featured collections
09 Sep 2020
Health Data Research Hubs featured collections

Our seven Health Data Research Hubs are specialist centres of excellence, using health data to drive forward innovations and insights that improve patients’ lives across a wide range of conditions. For the first time, we have now brought together their research collections in a single place on HDRUK’s Innovation Gateway, providing researchers with an unrivalled repository of resources that will help to accelerate research and collaboration.

Find out more here.

Health Data Research Hub Gateway Collections:


Unmet demand dashboard
08 Sep 2020
Unmet demand dashboard

Not finding what you are looking for can be frustrating. This is why we have created the unmet demand dashboard. This will enable us to track queries that do not return results, and take action to bring specific new datasets/tools/other on the Gateway.
Log on onto the Gateway to see the new dashboard under your profile. Tell us what you think.


Metadata technical information now live on the Gateway for all datasets
08 Sep 2020
Metadata technical information now live on the Gateway for all datasets

Innovators need to quickly understand if a specific dataset is of use to their project. Key to this understanding is the completeness of the metadata related to the datasets so innovators know if there will be enough information to make a decision, but also the technical metadata for this dataset, so innovators can better understand the composition of the dataset.

To facilitate this journey, the Gateway now has a visual representation of metadata quality on all dataset pages, as well as detailed technical metadata when available. Just search for a dataset, and you will see in the top right corner the metadata quality wheel. You can click on it for more details. Clicking on "Technical details" will show all variables related to this dataset.


Phenotypes library now integrated in the Gateway
08 Sep 2020
Phenotypes library now integrated in the Gateway

The Phenotype library is now an integral component of the Gateway and will enable you, for example, to refine your search results to only match the exact phenotypes you are interested in.

Electronic Health Records (EHR) are a valuable resource for researcher and clinicians for improving health and healthcare. They 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. HDR UK National Phenomics Resource has established a national standard for creating, evaluating and representing phenotypes, to accelerate the impact of discovery through increased transparency and replicability.



Course details now available
26 Aug 2020
Course details now available

We have just add details for quite a number of exciting courses from our training partners onto the Gateway. Click here to start exploring your learning opportunities. Please do also share in our collaboration area ideas for future courses.