Vital data and research projects to tackle COVID-19 searchable health data portal
Health Data Research UK has launched the next phase of the Health Data Research Innovation Gateway – a portal that allows researchers and innovators to find information about more than 440 health datasets and request access to them, including for research into the COVID-19 pandemic.
This includes data from the COVID-19 Symptom Study, led by King’s College London and health science company ZOE, which has over 3.5M users who are regularly reporting on their health and symptoms. The data from their Symptom Tracker app is proving vital for research and influence on health policy, evidenced by the recent addition by the UK Government of loss of sense of smell and taste as a recognised symptom of COVID-19. The study is also supported by BREATHE–The Health Data Research Hub for Respiratory Health, based at Edinburgh BioQuarter.
Another new addition to the Gateway is the national chest imaging dataset, which contains data on x-rays, CT and MRI images from hospital patients across England –data that can be used for responsible and ethical research to inform the response to COVID-19.
The Gateway now includes the ability to search for research projects, publications and health data tools, including those related to COVID-19. New interactive features provide a forum to collaborate and connect with other researchers and the ability to add COVID-19 data research projects, which are prioritised and reported by HDR UK to the Scientific Advisory Group for Emergencies (SAGE). These features have been developed in collaboration with scientists, data custodians, patient and public representatives, with a focus on supporting efforts to tackle the COVID-19 pandemic as well as wider major health and care challenges.
These developments are being delivered at a pivotal time for health and care research in the UK, with health databeing central to the national and global fight against COVID-19, with the Gateway already being used by researchers and innovators to request access to crucial datasets relating to the pandemic.
After an open tender and competitive selection process, HDR UK is working with PA Consulting, a global innovation and transformation consultancy, to deliver the new developments in the Gateway. The Gateway is being developed as part of the Digital Innovation Hub Programme, led by Health Data Research UK and funded by UK Research & Innovation’s Industrial Strategy Challenge Fund.
Caroline Cake, Chief Executive Officer, HDR UK, said: “ Access to health data for research has never been more important, and the current pandemicputs this inurgent perspective. We are fortunate to have incredible health datasets in the UK, including those that are helping to tackle COVID-19, and making these more widely available can enable scientists to discover what they need to help answer their important research questions. We continue to work with our fantastic Public Advisory Board and COVID-19 patient group of over 60 patient and public representatives to help guide us as we develop these services and tools.”
Sarah Brooke, Deputy Chair of HDR UK’s Public Advisory Board said: “ It has been great to play my part in the public and patient involvement in building the Gateway so far. This is crucial to establishing and maintaining public trust. As with all of HDR UK’s work, it is vital that we keep the patient voice at the core of the vision for the Gateway going forward to ensure that it continues to put benefits to the public, patients and the NHS first.”
The Gateway Minimum Viable Product (MVP) was launched in February 2020 as a tool allowing researchers to search information on datasets and request access to these via the organisation that manages the data. The Gateway does not itself store patient data, and it continues to be the responsibility of the organisation that holds and manages data to decide whether or not to approve any data access requests.
Health Data Research UK is committed to supporting ethical and responsible research and innovation and will only list information about datasets from organisations that follow its principles for participation.
The next stage of the Gateway will continue to be developed in partnership with patients, the public, clinicians and researchers. If you would like to get involved, or to provide feedback on this release, contact Health Data Research UK at firstname.lastname@example.org.