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.

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.

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

• Growing up in Bradford (BiB)

Health Informatics Centre - the University of Dundee

• Scottish index of Index of Deprivation (SIMD)
• Covid-19 Tests
• Scottish Care Information (SCI) Diabetes
• Electronic Communication of Surveillance in Scotland (ECOSS) Lighthouse Labs

NIHR Nottingham Biomedical Research Centre

• UK BioLAM (lymphangioleiomyomatosis)
• MR measures of liver fibrosis (MRker)

PIONEER

• A dataset of hospitalised patients with Sarcoma
• Hospitalised Community Acquired Pneumonia: granular pathway and outcome data
• National Early Warning Score 2 (NEWS2) scores in acutely unwell patients
• Clinical characteristics of hospitalised primary biliary cholangitis patients

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

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 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

• Dataset: GPES Data for Pandemic Planning and Research (COVID-19)
• Custodian: NHS Digital
• About: Fortnightly collection of GP data to support the UK’s response to the coronavirus pandemic
• Views: 1099

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.

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

• Crohn's Disease Metabolic Syndrome & Related Disease Outcomes
• Inflammatory Bowel Disease datasets - Data profiling GWM

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

UCLEB Consortium

• University College London - Edinburgh-Bristol (UCLEB) multi-omics consortium

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:

• UK Longitudinal Linkage Collaboration (UK LLC)

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.

• Avon Longitudinal Study of Parents and Children (ALSPAC)

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.

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 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.

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)

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

• The Fenland Study
• The EPIC-Norfolk Study

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

• Scarred Liver
• 3CN Cirrhosis Cohort
• Non-invasive assessment of portal hypertension using quantitative MRI (MRQuee)
• Beta-blocker Stratification using MRI to assess portal pressure (B-SMaRT)

Clinical Practice Research Datalink (CPRD)

• CPRD GOLD linked COVID-19 Hospitalisation in England Surveillance System (CHESS)
• CPRD Aurum linked COVID-19 Hospitalisation in England Surveillance System (CHESS)

Explore all CPRD datasets listed on the Gateway, here.

PIONEER

• Hospitalised and ventilator acquired pneumonia severity, treatments, outcomes
• Antimicrobial prescribing surveillance data during the COVID-19 pandemic
• Urinary tract infections acute presentations: microbiology, treatment, outcome
• Longitudinal hospital prescribing data for >48,000 deeply phenotyped patients
• A dataset of monitored patient safety indicators in 3 acute hospital settings

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

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:

• Susheel Varma, Chief Technology Officer (interim), HDR UK, and co-author of the paper: Principles and Best Practices, Towards TRE Ecosystems
• A representative from HDR UK’s Public Advisory Board (tbc)

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.

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.

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:

• Peer-led, Professionals Assisted Pulmonary Rehabilitation (PLPAPR): pilot study

• Respiratory rate counters in paediatric pneumonia diagnosis

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

PIONEER:

• Deeply phenotyped clinical data for hospitalised Atrial Fibrillation patients

• Demographic risk factors, biomarkers, physiology for Acute Compartment Syndrome

• Cancer and cerebrovascular events: frequency, cancer types and outcomes

• Granular ICU data focussing on the impact of lactate readings on outcomes
• The impact of multi-morbidity on care pathways during COPD hospitalisations
• Investigations, interventions, and outcomes for acute coronary syndrome
• Laboratory turnaround times processing electronic blood test orders in the NHS

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

INSIGHT:

• Cataract surgery and visual outcomes at QE Hospital, Birmingham, UK

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

CPRD:

• CPRD GOLD linked Second Generation Surveillance System
• CPRD GOLD linked Intensive Care National Audit & Research Centre

• CPRD Aurum linked Second Generation Surveillance System

• CPRD Aurum linked Intensive Care National Audit & Research Centre

Explore all CPRD datasets listed on the Gateway, here.

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.

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.

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.

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!

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

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

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...

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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

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.

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

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

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.

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

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

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

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

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

Have a look at the twelve latest datasets on the Gateway:

ALLIANCE - NHS DIGITAL
Improving Access to Psychological Therapies Data Set
Pillar 1 - England (Second Generation Surveillance Systems)
Pillar 2 - Covid-19 UK Non-hospital Antigen Testing Results
Secondary Uses Services

ALLIANCE - NI HBS
COVID antigen testing - Pillar 2
Enhanced Prescribing Database

ALLIANCE - SAIL
Lifelong Learning Wales Record
ONS 2011 Census Wales

OTHER - ONS
Labour Force Survey (Household)
Labour Force Survey (Longitudinal)
Labour Force Survey (Person)
Linked Census and death occurrences

Photo by Joshua Sortino on Unsplash

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.

New datasets now discoverable on the Gateway from hubs and Alliance members:

SAIL: Daily Situation Report Data

BREATHE:

• Early Pandemic Evaluation and Enhanced Surveillance of COVID-19 (EAVE II)
• Effects of second-hand smoke on pregnant women: a phenomenological study
• 4 Country ChrOnic: estimating respiratory disease burden in adults, South India
• Prevention, detection, treatment: adult lung disease/cancer in rural Tamil Nadu
• Theory of Planned Behaviour Intervention: respiratory disease in South India
• Asthma and COPD: practices and perceptions of GPs in rural India

ISARIC 4C: COVID-19 Clinical Information Network (CO-CIN)

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:

• BREATHE: Respiratory Health
• NHS DigiTrials: Clinical Trials
• PIONEER: Acute Care
• Discover-NOW: Real World Evidence
• Gut Reaction: Inflammatory Bowel Disease

• DATA-CAN: Cancer

• INSIGHT: Eye Health

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.

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.

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.

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.