INFORM case study

COVID-19 represents an ongoing threat to immunocompromised groups and people with certain underlying health conditions. While the risk has largely disappeared for the general population, vulnerable groups are still at significant risk. The INFORM study aimed to characterise and describe the risk of severe COVID-19 across immunocompromised groups as the pandemic began to transition to an endemic phase.

To evaluate the impact of COVID-19 on immunocompromised populations compared to the general public, researchers used near real-time data from a representative 25% sample of the English population.

The NHS England Secure Data Environment (SDE) provided unique access to secure, de-identified data routinely collected from primary and secondary care. This data was linked to national information on COVID-19 surveillance, vaccination status, primary care medication dispensations, and mortality.

This integrated dataset allowed researchers to understand the risk factors and health outcomes associated with those who have weakened immune systems as the pandemic evolved over time.

Initial findings were published in the Lancet Regional Health (Europe). The results have featured in over 10 abstracts and conference presentations, and disseminated through professional patient associations and institutional channels

Physician advisors were surprised by the significant discrepancy in COVID-19 outcomes between vulnerable populations and the general public. While the burden has largely disappeared for the general population, it continues to profoundly impact vulnerable groups. Motivated by these insights, physicians proactively shared the information with colleagues treating at-risk patients.

The INFORM study continues to educate academics and physicians, enabling more informed treatment decisions for vulnerable patients. It also empowers at-risk individuals with evidence shared through SAGE and other public-facing groups, helping them advocate for appropriate clinical approaches.

This population-wide study, the first of its kind for the Secure Data Environment network, revealed nuanced risk levels associated with different medications, providing granular information crucial for patients' understanding of their COVID vulnerability. This impacts patient behaviour and supports improved everyday quality of life for the immunocompromised community.

Beyond clinical settings, this research informs policy decisions and resource allocation, potentially leading to enhanced care strategies for high-risk patients.

By identifying the immunocompromised groups at highest risk, these findings enable a more targeted approach to preventive interventions and vaccination programmes. This precision allows healthcare providers and policymakers to allocate resources where they are likely to have the greatest impact, potentially saving lives and improving outcomes for vulnerable individuals.