The National Core Studies is made up of six programmes:
- Epidemiology and Surveillance (responsible for who has COVID-19 and where they are located)
- Clinical Trials Infrastructure (responsible for ways to prevent and treat COVID-19)
- Transmission and Environment (how is COVID-19 being passed on)
- Immunity (how well the vaccines are working)
- Longitudinal Health and Wellbeing (the long term impacts on health and wider society)
- Data and Connectivity
About Data and Connectivity
The Data and Connectivity programme is led by both Health Data Research UK (HDR UK) and the Office for National Statistics (ONS). The aim of the Data and Connectivity programme is to support the other five National Core Studies (NCS) by improving access to data. This is really important as it helps the other five studies access important data so that they can do important research answering priority COVID-19 questions.
The Data and Connectivity programme does not do research itself but instead allows researchers on the other NCS programmes, and across the UK, to request access to data in a quicker and more efficient way, which in turn helps research to progress more rapidly.
As well as improving access to data, the Data and Connectivity programme is working with research institutions to ensure data is properly safeguarded and only accessible by authorised researchers for approved purposes.
The NCS programmes are using research, health and other data (such as employment, education, and social) to better understand and manage COVID-19 and to help our short-term and long-term responses to the pandemic.
Patients tell us how COVID-19 has affected them and why research using health data is important
The patient voice is at the heart of everything we do. We spoke to patients who shared their personal experiences of COVID-19 and why they believe research using health data is important.
Accessing data and the role of the Gateway
Accessing data is an important and sensitive topic and there are many rules and restrictions in place to ensure that data is stored and used in a safe and trustworthy way. The Health Data Research Innovation Gateway does not hold or store any patient or health data but is a portal that allows researchers to search for and request access to data that is stored in other places.
A big part of the Data and Connectivity programme has been to add information about more collections of data to the Gateway. There are now over 600 collections sets of data (known as datasets) discoverable on the Gateway. This has greatly improved how many datasets are available for researchers to access, therefore improving research outcomes, which in turn leads to public benefit through public health interventions and health policies.
Impacts and benefit to the public
Data and Connectivity has allowed researchers to progress their research quicker, through being able to access data quicker and more efficiently. The impacts and benefit to the public are wide-reaching. Examples include:
The PRINCIPLE Trial is looking for medicines that can help people with COVID-19 symptoms get better quickly and stop them needing to go to hospital. The recruitment process for the clinical trial was sped up by access to large, linked datasets as well as engaging patients and the public through HDR UKs patient and public networks and panels to better understand public views of the proposed approach.
In April 2021 it was announced that there had been a breakthrough and a cheap and widely accessible drug usually prescribed for asthma was able to be given to people with COVID-19 to recover quicker at home.
Find out more about the PRINCIPLE Trial and our involvement here PRINCIPLE – accelerated recruitment for Clinical Trials through rapid access to large, linked datasets and integrated patient engagement – HDR UK
We interviewed Heather, a nurse on the PRINCIPLE trial, to hear about her experiences working with patients on the trial – find out more Interview with Heather Rutter, Senior Clinical Research Nurse, PRINCIPLE trial – HDR UK
12 funded research projects
A two-week open competition for funding was held and 47 applications were submitted. An independent panel of clinicians, academics and patient and public representatives selected 12 research projects from Universities and institutes across the UK to receive funding. The applications were assessed on a number of things, including the expected benefits to patients and the public and how the research would improve data for future studies.
The projects are all working to research and answer important questions, such as the differences in risk of COVID-19 between minority ethnic groups, the effects of the pandemic on employment for women and men and the safety of vaccines.
To read the summaries of each of the 12 projects please visit here: HDR UK selects 12 projects to accelerate use of data for vital COVID-19 research – HDR UK
Spotlight on: ‘Ethnicity and COVID-19: investigation the determinants of excess risk”
This research project is aiming to find out why minority ethnic groups may have a greater risk. You can watch a video with the lead researcher, Kamlesh Khunti, here:
Frequently Asked Questions
We know that patients and the public have a lot of questions, to view our frequently asked questions please click here.
COVID-19 Research Roundup | 12 May 2021
We are continuing to work in partnership to support the UK government and the NHS in England, Northern Ireland, Scotland and Wales to enable rapid health data research into COVID-19.
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Data and Connectivity Videos
Watch our series of monthly video blogs showcasing the latest COVID-19 news and research.