The need for data in research
We have seen an immediate response to COVID-19 by UK researchers and innovators across the UK, with over 500 colleagues from universities, healthcare, charities and industry joining our Slack channel to collaborate, share ideas and to provide information on vital datasets. All these research efforts require access to data and, in many cases, require linked datasets. To ensure the most promising research questions are supported and to reduce distracting the operational activities of the NHS, a process to prioritise these research efforts is urgently needed.
What we are doing
We have teamed up with NHS Digital, the UK Health Data Research Alliance, NHS national data custodians in Scotland, Wales and Northern Ireland, national providers of specialist cardiovascular data and The British Heart Foundation to provide:
- a process to streamline and prioritise the most important health data research questions
- an approach to link data
- access to secure analytical environments for researchers to answer these questions to improve understanding and treatment of coronavirus.
This will enable progress on the most important health data research initiatives – those that aim to deliver the quickest benefits to the health of people across the UK – to be reported to the Scientific Advisory Group for Emergencies (SAGE). Many of these questions will be early in the research pipeline and some may not lead to a research project. However, we hope that some will bring transformative discoveries to our understanding of this devastating disease.
As well as questions from policymakers and researchers, we are keen to encourage health data research questions based on experience and observations from front-line clinicians working with patients affected by COVID-19.
Input from patients and the public
We are working with patients and members of the public across the whole process to ensure that these activities are transparent, that requests to access data are made in the interests of patient and public benefit and that research is safe and trustworthy. We will do this by consulting with our Public Advisory Board, patient/public groups working with the data custodians, and with our newly formed COVID-19 public advisory group.
To read the reports submitted to SAGE, view our web page here.
We will be working at pace and, in the interests of transparency, will publish regular updates on our progress via our website, social media (follow @HDR_UK) and via our monthly newsletter.