Long COVID patient registry could support long-term monitoring and service improvements

Recommendations for a voluntary Long COVID patient registry or similar mechanism to monitor the condition in Wales over the long-term offer could support service improvement and offer insight for other future patient registries and health policy decisions, according to the authors of a paper published today by the Journal of the Royal Society of Medicine.

The recommendations were developed by leading independent think tank for health and care, the Bevan Commission. Recommendations include improving healthcare quality by involving both patients and healthcare professionals in the design of a registry and, to promote equity of access, allowing patients to join the registry through self-referral.

The prevalence of Long COVID across the UK remains highly uncertain, but modelling suggests a significant increase. Therefore, managing the long-term consequences in the population will remain a major challenge for health and care services during the next stage of the pandemic.

Baroness Ilora Finlay, Co-Vice Chair of the Bevan Commission and one of the paper’s authors, said: “Despite the uncertainties of Long COVID, the need for long-term monitoring is essential to support research, service improvement and patient engagement. Our recommendations for establishing a Long COVID Registry for Wales, or similar mechanism, provide valuable insight to inform both health policy decisions and patient registries in alternative contexts.”

The Bevan Commission’s other recommendations include the consolidation of digital infrastructures to realise the full potential of a registry, developing a registry with the dual purpose of research and service improvement, and adopting the concept of prudent healthcare, an approach underpinning the work of the Bevan Commission that considers how to collaborate with others, make effective use of the available resources and ensure high quality and consistent care.