In this issue:

• Learn about an exciting new European partnership.
• Explore some of the most impactful outputs from the DIH Programme, including the Gateway!
• Discover the Gateway Collection of the Month.

Read the September Gateway newsletter here.

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

HDR UK joins ELIXIR-UK, bringing additional expertise in health data research to the European intergovernmental consortium.

Health Data Research UK (HDR UK) is the latest organisation to join ELIXIR-UK, a network of member organisations that provides bioinformatics resources to support the wider data research community.

ELIXIR-UK is the UK node of ELIXIR, a life sciences research infrastructure that connects hundreds of organisations and scientists across Europe. It coordinates and develops services and training to make it easier for researchers to find, analyse and share life sciences data, enabling them to gain greater insights into public health, the environment and the economy.

Being a member of ELIXIR-UK both complements and enhances HDR UK’s continued efforts to accelerate the trustworthy use of health and related data for research.

Read the more in the announcement on the HDR UK website.

The Digital Innovation Hub (DIH) Programme was established in 2018 with a vision of realising the enormous potential of the UK’s health data for public and patient benefit. Five years later and this pioneering programme has reshaped the health data research landscape and created lasting impact.

The Health Data Research Hub Network (the Hubs), the UK Health Data Research Alliance (the Alliance) and the Health Data Research Innovation Gateway (the Gateway), along with with a robust PPIE strategy and strong partnerships with industry, were key to the programme's success.

The instrumental effort of everyone involved in the DIH Programme has made high-quality, research ready data more discoverable than ever before, with access now more streamlined and governed by best practices set at the national level. And whilst there remains further work ahead, the programme has successfully created a strong foundation for the future, setting out an innovative and progressive pathway towards scaling up solutions that can fully unlock the transformative potential of health data research.

Take a look at back at the programme's remarkable journey in the article below.

A pioneering programme to establish a national infrastructure for health data science

September is Pain Awareness Month, dedicated to raising public awareness and understanding of pain.

Alleviate is the Advanced Pain Discovery Platform (APDP) Data Hub and part of the the Health Data Research Hub Network. It works with leading experts in pain research, along with its patient and public members and industry partners to make better use of health datasets in pain research to improve patient care.

One of Alleviate's key objectives is to standardise and curate a range of pain datasets. This effort aims to provide researchers with better access to and analysis of these datasets in order to answer complex questions about chronic pain.

Alleviate have made a number of pain-related datasets more discoverable via the Gateway, including the Hub's most recently curated GOAL and Omega-3 datasets, a historical cohort study looking at osteoarthritis and a nutritional study on the gut microbiome, respectively.

Explore the Alleviate Collection on the Gateway

Alleviate are also sharing a series of stories from their patient and public members to recognise Pain Awareness Month, detailing their lived experience with pain and the reasons why they became involved in the Alleviate Hub. Read them on the Alleviate website throughout September.

Our August bulletin is now available to read online:

• Take part in our survey and help inform feature and service developments for the Gateway
• Learn about our participation in RSECon23
• Discover the Collection of the Month

Read the August Gateway newsletter here.

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

We would like to hear from researchers currently using or interested in using health-related data assets for their work. What is most important to you when searching for and identifying datasets that could be useful for your research?

Please complete our short survey (link below) to share your insights. The findings will be used to help prioritise feature and service developments for the Gateway, helping to improve the research experience for all.

Researchers! Tell us your about data discovery needs

Please feel free to share the survey link.

Emily Jefferson, HDR UK's Chief Technology Officer, is delivering the keynote talk at the upcoming UK Trusted Research Environments (TRE) Community Meeting.

The meeting is happening in Swansea on Monday 4th September 2023, and is a satellite event connected to RSECon23 (more on that here). The day will bring together stakeholders from all sectors and disciplines to discuss the current state of TREs, look at existing barriers, and define the future provision of TREs in the UK.

The meeting is open to everyone and free to attend. Registration is open until Thursday 17 August.

The event is sponsored by The Alan Turing Institute, HDR UK and DARE UK.

Members of the HDR UK Technology Team are attending the seventh annual conference for research software engineers, RSECon23.

The conference is taking place in the week beginning Monday 4th September with satellite events on the Monday and Friday, and the main conference starting on Tuesday 5th September.

Sam Cox, Senior Research Software Engineer at HDR UK and the University of Nottingham, and Emily Jefferson, Chief Technology Officer at HDR UK, are participating in this year's RESCon23 programme:

• Catch Sam as part of the 'Working with and as Researchers' session on
  Tuesday, 5 September (13:30-15:00) where he'll present a case study on RSEs as researchers rather than collaborators, based on his recent experience in the field of health data.
• Come along to Emily's talk to find out how RSEs in other disciplines can bring their expertise to the field of sensitive data for research. Part of the 'Platforms' session on Tuesday 5 September (13:30-15:00).
• Emily is also taking part in the Plenary Session on Thursday 7 September (09:45-10:30) where panels members will be sharing their experiences of RSE roles outside of academia.

Branwen Snelling and Calum Macdonald, Senior RSEs at HDR UK, will also be in attendance. We look forward to seeing you there!

Organised by the Society of Research Software Engineering, RSECon is a chance for software engineers and researchers across the UK to meet and discuss the development and recognition of research software, with the opportunity to participate in talks, posters, workshops, panel discussions, networking sessions, and more.

HDR UK are sponsoring RESCon23, along with DARE UK, and it's satellite event on Trusted Research Environments the Monday before the conference.

The Department for Health and Social Care (DHSC) published their draft Data access policy update in May 2023, opening a period of consultation (now closed) to gather feedback to inform the final version and longer-term priorities and actions for data access policy.

HDR UK's response to the consultation identified several key areas of feedback:

• The scope of the policy
• Linkage to non-NHS data
• The need for bold approaches to harmonised data access processes
• Exceptions and the role of co-design and public involvement in decision making

David Seymour, Director of Infrastructure and Services at HDR UK, explains more in this article.

In this issue:

• Learn about an exciting development update that now makes it easier for custodians to manage their 'team' on the Gateway
• Understand how the last 10 years have transformed the use of genomic data and technology across clinical care and research
• Read HDR UK's response to the Department for Health and Social Care's draft Data access policy update

Read the July Gateway newsletter here.

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

The 5 July 2023 marked 75 years of the National Health Service, the first universal health system to be available to all, free at the point of delivery.

Ten years ago to the day, Genomics England was launched to deliver the 100,000 Genomes Project with the aim of accelerating research and transforming healthcare. Since then, it has provided evidence to justify use of whole genome sequencing for individual care and now delivers this component of NHS England’s integrated Genomic Medicine Service.

The last 10 years have truly harnessed the power of genomic technology, bringing research and clinical care closer together and framing a data driven age for health and medicine.

Learn more in this article by Professor Tim Hubbard.

Our latest release brings some exciting changes to how 'teams' operate within the Gateway. A ‘team’ on the Gateway is a group of associated members from the organisation responsible for the governance and management of the data they hold – i.e. the data custodian, or ‘publisher’ as we call it on the Gateway.

Data custodians use ‘teams’ on the Gateway to add and edit metadata descriptions (summary information describing the datasets they hold) and manage data access requests received from registered Gateway users.

Our latest release makes it easier for custodians to organise their teams through a self-managed approach to team management. As part of this update, we have created some new roles and simplified the UI of the team management dashboard.

Find about more, including how to update your existing team on the Gateway, in this short guide.

The UK Health Data Research Alliance is carrying out a survey to understand the current level of adoption of the Observational Medical Outcome Partnership (OMOP) Common Data Model (CDM) throughout the UK and inform future plans.

Whether you're a data custodian, data user or researcher, please share your experiences with the OMOP CDM and thoughts on how we can support its adoption by completing this short survey. It should take about 15 minutes to complete and will help inform future activities to facilitate the use of standardised data to answer healthcare questions using real-world evidence.

Please complete this survey by Friday 7th July.

June's update is now available to read online. Find out about:

• A new health data science seminar series in partnership with the ONS
• HDR UK's action plan, as part signatories of the Technician Commitment
• Upcoming conferences members of the HDR UK technology team are attending
• And more!

Read the June Gateway newsletter here.

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

We're super excited to introduce Elise Uzokwe who's joining our team over the summer as part of the Black Internship Programme. Welcome to the team!

Tell us a bit about yourself.

Hi. My name is Elise and I have just finished my third year of medical school at UCL. This year I did an intercalated degree in oncology. Part of this involved completing a dissertation, which focussed on bioinformatics. My project involved creating my own in-silico cancer genome using Python, and then using this to build an algorithm to detect a certain type of deletion that could be applied to large datasets derived from patient cancer samples.

What made you apply for the Black Internship Programme?

With the increased role of technology in improving healthcare on both an individual and systemic basis, this programme stood out to me as an interesting way in which I can cultivate both my knowledge of healthcare with my newfound coding skills. Furthermore, I believe this programme is a great way to help tackle the low proportion of black data scientists within this sector.

What are you most looking forward to about joining the technology team at Health Data Research UK?

As someone who has used health datasets in the past, I am aware of the difficulties encountered in both finding and accessing appropriate data. I am excited to join the technology team as this is an opportunity to put my computational skills into practice, helping improve the accessibility of the Gateway. I am also excited to explore the role of software development in aiding both the visualisation and design of health data resources.

What do you like to do in your spare time?

After a particularly intensive exam season, I have definitely learnt the importance of unwinding! I am an avid crocheter and I am trying to make a habit of reading every day.

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Elise joins us for eight weeks from Monday 3 July.

Learn more about the Black Internship Programme.

As signatories of the Technician Commitment, HDR UK has published an Action Plan outlining how the institute will support the vital work and careers of technologists within the health data research sector.

Emily Jefferson, Chief Technology Officer HDR UK, said:

“Technologists and the data infrastructure, software and services they build enables the research outputs which advance our understanding of diseases, improve patient care and drive innovation in healthcare.

HDR UK is delighted to be a signatory of the Technician Commitment and to further engage with our community to empower technologists, nurture their professional development and amplify their impact. Our goal is to build a thriving technology ecosystem fuelling health data science research outputs which improve people’s lives.

Find out more about the Technician Commitment and read the Action Plan.

In this issue:

• Learn more about DataLoch's Respiratory Register
• Find out about HDR UK's exciting funding news
• Discover our Gateway Collection of the Month
• Plus more!

Read the May Gateway newsletter here.

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

Health Data Research UK was established five years ago with core funding of £52.7 million. Following an in-depth review by an international panel, the funding for 2023 to 2028 has been increased to £72.3 million over five years.

The funding, from nine of the largest government and charity research funders in the UK, will support HDR UK’s core work to accelerate trustworthy access to health data and improve treatments, deliver better health care and save lives.

HDR UK director, Professor Andrew Morris, said: “The transformative potential of health data research is a long way from being realised in full. Only a small proportion of NHS, biomedical and health-relevant data is accessible for research. Our work is far from done if we are to benefit patients and improve lives – this significant funding award is a step change in ensuring we achieve this mission.”

The next five years of funding will see HDR UK follow a plan to increase the speed, scale and quality of health data science to enable new discoveries, building on the success of its first five years, particularly during the COVID-19 pandemic when the rapid linking and analysis of health data across the four devolved nations informed government responses at many stages.

Read more in this press release.

Two new datasets descriptions were added to the Gateway in April.

Secure Anonymised Information Linkage (SAIL) Databank

• Data First Prisoner Custodial Journey Dataset

This dataset contains information about individuals serving custodial sentences in England and Wales who appear within records from operational databases used in prisons for the management of offenders.

DataLoch

• DataLoch Respiratory

A database of South-East Scotland residents diagnosed with Chronic Obstructive Pulmonary Disease (COPD) or Interstitial Lung Disease (ILD) containing research-ready data on demographics, diagnoses, condition events, measurements and medications.

Search and discover 800 dataset descriptions currently listed on the Health Data Research Innovation Gateway.

The Cohort Discovery search tool will be unavailable to users for 24 hours from 8am on Tuesday 2 May 2023.

We are working with our technology partners, BC Platforms, to upgrade the software behind the platform. Highlights of the upgrade include a new interface for improved user experience, easier and clearer navigation and visibility to available traits and collections, plus real-time updates of ongoing query results.

Cohort Discovery is a Gateway feature that allows users to carry out a more specific search and assessment on a subset of datasets listed in the Gateway, without having access to the underlying data.

The functionality was developed as part of the CO-CONNECT programme - a collaborative project designed to help scientists across the UK find and access data at pace to accelerate COVID-19 research. BC Platforms were (and still are) the technical partners that supplied the software to drive federated search, specifically their BC|RQuest, BC|Link and BC|Insight tools.

The DARE UK (Data and Analytics Research Environments UK) programme launched in July 2021 to investigate the requirements and tools needed to establish a secure, interconnected, and interoperable network of Trusted Research Environments (TREs) for UK-wide sensitive data research.

Phase 1 of the programme (Design and Dialogue) runs until March 2024 with efforts focussed on engaging with stakeholders, including researchers, technologists, the public and others, to understand what’s needed to enable more efficient, coordinated and trustworthy data research across the UK.

Outcomes from this extensive, open dialogue phase have guided DARE UK in designing a model architecture for its proposed federated network of TREs to strengthen sensitive data research. The initial draft architecture blueprint is now ready for pubic review and comment.

Read the report and find out more, including how to share your feedback, on the DARE UK website.

Learn more about the TREs HDR UK are currently working with in this Gateway Collection.

Welcome to April's Gateway update. In this issue:

• Explore the latest datasets now discoverable on the Gateway.
• Access the recording from our recent Data Access and Discovery webinar.
• Learn more about Alleviate's (the HDR Hub for pain data) recent data GOAL.

Read the April 2023 newsletter here.

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

In March, three new datasets were made discoverable via the Health Data Research Innovation Gateway.

Secure Anonymised Information Linkage (SAIL)

• Data First Prisoner Custodial Journey Dataset
• Data First Probation Dataset

Prisoner and probation data across England and Wales.

Medical Research Council National Survey of Health and Development (NSHD)

• MRC NSHD

The MRC NSHD is the oldest and longest running of the British birth cohort studies, starting in 1946 and continuing to this day. Data collected during this time includes information on maternity care, physical and cognitive function, socioeconomic circumstances and educational attainment. The MRC NSHD cohort is managed by the MRC Unit for Lifelong Health and Ageing at UCL and is part of the UK Longitudinal Linkage Collaboration.

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Search and discover 800 dataset descriptions currently listed on the Health Data Research Innovation Gateway.

For our first Data Access and Discovery webinar of 2023 we explored some of the data services and expertise on offer from two Health Data Research Hubs: Discover-NOW and PIONEER.

We were joined by:

• Ben Pierce - Head of Data Analytics and Partnerships, Imperial College Health Partners and Discover-NOW
• Suzy Gallier - Head of Informatics Research & Commercial Development at University Hospitals Birmingham NHS Foundation Trust and Technical Deputy Director of PIONEER
• Liz Sapey - Director of the Institute of Inflammation and Ageing at the University of Birmingham and Director of PIONEER
• David Seymour - Director of Infrastructure and Services at HDR UK

A recording of the webinar is now available to watch online.

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.

In this issue we explore the latest datasets now discoverable on the Gateway and learn more about the UK's national TRE network!

Read the March 2023 update here.

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

Join us for our first Data Access and Discovery webinar of 2023 as we explore some of the data services and expertise on offer from two Health Data Research Hubs: Discover-NOW and Pioneer.

We’ll be joined by:

• Amanda Lucas - Director of Information at Discover-NOW
• Suzy Gallier - Deputy Director of PIONEER
• David Seymour - Director of Infrastructure and Services at HDR UK

Register to attend.

>> View the PIONEER Collection on the Gateway.

>> View the Discover-NOW Collection on the Gateway.

During January and February, four new dataset descriptions were added to the Gateway.

Health and Social Care Northern Ireland

• Dental Payment System

This dataset contains information on dental activity carried out by General Dental Practitioners (GDP) in Northern Ireland, including data on dental surgeries, patient registrations, treatments carried out and submitted to the Business Services Organisation (BSO) for payment and payments made to GDP.

Manchester University Hospitals NHS Foundation Trust

• Pancreatic Cancer - Early Detection Prediction

This is a dataset of patients who have either been diagnosed with pancreatic cancer or are deemed high risk, and includes both patient level demographic, inpatient/outpatient and laboratory data. The dataset was curated for use in a predictive model.

Secure Anonymised Information Linkage (SAIL) Databank

• Student Health and Wellbeing Survey (SHWS)
  

The student survey is completed every two years by students in mainstream secondary schools and includes data on mental health and wellbeing, substance use and gambling, physical activity and diet, school life, family and social life, and relationships.

Clinical Practice Research Datalink (CPRD)

• Pregnancy Register for CPRD Aurum

The CPRD Aurum Pregnancy Register contains a list of all pregnancy episodes within the CPRD Aurum database (routinely collected electronic health records from UK GPs). It contains data variables like the start and end of pregnancy, trimester dates and the outcome of the pregnancy.

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Search and discover 800 dataset descriptions currently listed on the Health Data Research Innovation Gateway.

Trusted Research Environments (TREs) are highly secure computing environments that provide remote access to health data for approved research projects.

Improving the national TRE network was a key objective of the COVID-19 Data and Connectivity National Core Study so that researchers could rapidly and securely access and analyse health data across the four nations of the UK.

Read the articles below to learn more about the UK's national TRE network.

The Secure Research Service: The UK’s largest Trusted Research Environment

In this post, Bill South, Deputy Director of the Research Services and Data Access at the Office for National Statistics (ONS), describes the Secure Research Service - how it was developed, what ONS and government data it holds, and how it's already enabling over 600 research projects.

SAIL Databank & National Core Studies: Accelerating the availability and accessibility of UK health data

The Secure Anonymised Information Linkage (SAIL) Databank began as a localised pilot project for the Swansea area but has now become the national TRE for Wales. Discover more from Chris Orton - SAIL Databank’s Programme Manager.

QResearch: High-quality data for world-leading research

QResearch is a large, anonymised database of GP records from over 35 million patients with longitudinal data tracking back over 30 years and is linked to mortality, cancer registration and hospital data. Learn more about this TRE from its co-founder, Julia Hippisley-Cox.

The Scottish National Safe Haven – a secure research environment for health data research

In this post, hear from Carole Morris, Head of Data and Modelling Services at Public Health Scotland about the Scottish National Safe Haven and its importance in advancing health data research.

The Honest Broker Service – the Trusted Research Environment for Northern Ireland

The Health and Social Care Honest Broker Service (HBS) gives access to de-identified health data for the population of Northern Ireland. Find out more about its development and use to date from Alan Harbinson - Principal Statistician and Head of the HBS.

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Health Data Research UK champions the use of TREs to enable the trustworthy use of health data for research. The UK Health Data Research Alliance (coordinated by HDR UK) convenes the workstream 'Aligning approach to Trusted Research Environments' to develop and define standard approaches to TREs.

Welcome to 2023. In this issue we take a look back at last year's Data Access and Discovery webinars and explore the most viewed dataset descriptions on the Gateway from 2022. Plus more!

Read January's Gateway newsletter here.

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

Ever wondered what the most popular Gateway dataset pages are? Here's a run down of the top ten most viewed from 2022.

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

No. 9

• Dataset: The Airwave Health Monitoring Study (AHMS)
• Custodian: Airwave (Imperial College London)
• About: The AMRS is a long-term occupational observational cohort study and tissue bank following up the health of ~53,000 police officers and staff across the UK.

No. 8

• 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.

No. 7

• Dataset: UK Longitudinal Linkage Collaboration (UK LLC)
  
• Custodian: Various
• About: 20+ longitudinal population studies datasets linked to COVID-19 health datasets held in a Trusted Research Environment hosted by the University of Swansea’s UK Secure Research Platform, accessible to approved UK-based researchers for COVID-19 related research for the public good.

No. 6

• Dataset: Trusted Research Environments for CVD-COVID-UK / COVID-IMPACT
• Custodian: Various (convened by the BHF Data Science Centre)
• About: Linkable health datasets in respective TREs in England, Scotland and Wales, accessible to approved researchers who are members of the BHF Data Science Centre's CVD-COVID-UK consortium.

No.5

• Dataset: Welsh Longitudinal General Practice Dataset (WLGP)
• Custodian: Secure Anonymised Information Linkage (SAIL) Databank
• About: This dataset provides attendance and clinical information for all general practice interactions, including patient symptoms, investigations, diagnoses, prescribed medication and referrals to tertiary care.

No. 4

• 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.

No. 3

• Dataset: Community Services Data Set
  
• Custodian: NHS Digital
• About: As a secondary uses data set, (CSDS) re-uses clinical and operational data for purposes other than direct patient care, setting out sets out national definitions for the extraction of data about children and adults.

No. 2

• 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.

No. 1

• 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.

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

Earlier this year we launched our new bi-monthly Data Access and Discovery webinar series with the aim of delivering an informative yet accessible online event that covered a wide range of topics and talking points from across the health data community.

Our themes for 2022 were:

• Data use registers
• Trusted Research Environments
• Reproducibility
• The Gateway
• The charity sector

In the blog below, we provide a short review of 2022's Data Access and Discovery webinars, including links to all recordings!

From TREs to the BRIAN app – our 2022 Data Access and Discovery webinars in review

Health Data Research UK's annual scientific conference is happening on Wednesday 14 December.

The free online event will celebrate the global health data revolution, and help build the knowledge, collaborations and public trust needed to enable data-driven discoveries which improve peoples’ lives.

It will feature:

• Keynote talks from internationally leading figures
• Interactive panel discussions to share learnings from Covid-19
• Awards for excellence in health data research
• Opportunities to network with the scientific community

There will also be a virtual marketplace where external partners and HDR UK programmes, including the Gateway, will be exhibiting.

Come along to the Gateway stand to meet our team and learn more about the platform’s key features and functionality. Plus, have go using the Gateway yourself and explore how you can get involved with its design and development.

We look forward to seeing your there!

Happy December! In this issue:

• Explore the HDR UK 2022 highlights from across our community
• Check out the latest dataset metadata added to the Gateway
• Learn more about our most recent development release
• And more!

Read the December Gateway newsletter here.

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

Nine new dataset descriptions were added to the Gateway in November, including seven from SAIL Databank.

DataLoch

• Edinburgh Ovarian Cancer Database

Established in 2019, the Ovarian Cancer Database builds on 40 years of data collection across the region of the South East Scotland Cancer Network, holding data on diagnosis, treatment and outcomes of patients undergoing care within the region.

SAIL Databank

• Diabetic Eye Screening Wales (DESW)

The Diabetic Eye Screening Wales service checks for eye problems caused by having diabetes, looking for damage to the back of the eye (diabetic retinopathy) which can lead to permanent sight loss - this dataset contains details of the screening carried out for diabetic patients.

• Magistrates court Dataset (MACO)

This dataset allows users to link to information in the Data First Magistrates, Crown Court, prisons and probation datasets. It does not itself contain information about people, their court appearances, or custodial journeys, but acts as a lookup to identify which records in the linked datasets refer to the same people.

• Crown Courts dataset (CRCO)

This dataset provides data on Crown Court use, containing one record per defendant per case giving details of defendant characteristics, offence categorisation, court proceedings, and outcomes.

• Looked After Children Adoption (LACA)
• Looked After Children Birthdays (LACB)
• Looked After Children Care Leavers (LACC)
• Looked After Children Education (LACE)

Children who are 'looked after' by the state are considered one of the most vulnerable groups in society. Being in state care is associated with poor social, educational and health outcomes. These data includes on adoption, birthdays, provision of care and education qualifications.

Cancer Epidemiology Unit, Nuffield Department of Population Health, University of Oxford

• EPIC-Oxford Study

EPIC-Oxford is the Oxford component of the European Prospective Investigation into Cancer and Nutrition (EPIC) - a large multi-centre cohort study with participants enrolled from 10 European countries. The EPIC-Oxford study began in the 1990s and follows the health of 65,000 men and women living throughout the UK, many of whom are vegetarian.

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Search and discover almost 800 datasets currently listed on the Health Data Research Innovation Gateway.

Discover this year's highlights from the Health Data Research UK community by opening a new door on our festive advent calendar every day between 1st and 24th December.

Look out for the Gateway entries!

Access the Highlights of 2022 advent calendar here.

Our final Data Access and Discovery webinar of the year focussed on the charitable sector so we invited the Brain Tumour Charity and the British Heart Foundation Data Science Centre to discuss how they're investing in the power of health data science to progress research.

Learn more about the background to this webinar in this blog post.

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.

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.

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 (ACONF)

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

• South East Scotland Cancer Database - Core Oncology Dataset

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)

• Antiviral Dataset (AVDS)

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.

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:

• Data Access and Discovery webinar recording - October 2022
• Additional Q&A document

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.

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

• NHS Lothian Secondary Care - Lothian extract from Scottish Morbidity Records
• NHS Lothian Secondary Care - Patient Management System extracts

CogStack - King’s College Hospital

• King's College Hospital MedCAT Natural Language Processing 2011-2019

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

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

• Our upcoming Data Access and Discovery webinar focussed on the work of charities in health data research
• The HDR UK-wide campaign to recognise World Mental Health Day - Data Saves Lives: Mental Health
• Release of the Gateway data use register widget

Read the October newsletter here.

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

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.

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

• Information on data use registers
• Improving transparency in the use of health data
• Gateway Release Notes (see September 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.

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

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.