We now know that COVID-19 affects people very differently. While some individuals may experience mild or no symptoms at all, others may become very ill and require hospital treatment.
By linking individuals’ COVID-19 symptom data with GP records of their treatment and outcomes, researchers can build a better picture of who is likely to experience ongoing symptoms or severe COVID-19. This could help us predict who is likely to need different treatments for a COVID-19 infection and encourage these individuals to seek clinical care sooner if they develop symptoms of infection. By comparing information in health records with symptom data, we can also get a picture of when and how long COVID is recorded in health records and where any gaps might be.
How is information accessed from health records?
‘Data linkage’ is when an organisation accurately, securely and confidentially collects information from your official records. It is an efficient way of improving the quality and volume of the data we use in our research with minimal burden to participants.
OpenSAFELY is a new, secure system for linking research data with health records in a trusted area. OpenSAFELY has been developed specifically for COVID-19 research and allows approved researchers to access summary information about COVID-19 diagnoses and treatment, and important related information such as other conditions a person has been diagnosed with. An important feature of OpenSAFELY is that it is a highly transparent, open-source system that provides a full public log of all activity on the platform.
Approval to access the OpenSAFELY platform is rigorously administered and is covered by detailed agreements to ensure that data to be accessed is agreed in advance. The researcher works in a restricted, secure area to access health record information at “arm’s length”. The researcher can never see or download individual health record information – the data we access are combined into a summary (e.g., a table).
We link to health record data using NHS numbers
Where participants have given their consent for health record linkage, we will supply NHS numbers and non-identifiable information in the secure OpenSAFELY platform to allow us to access records.
You can read more about health record linkage in the CSS Biobank Volunteer Information Sheet (page 8).