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 theme to follow.

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.