Establishing a Long COVID Registry for Wales 

Published:

Author: Bevan Commission

quotation icon

A specific attempt to capture a population of these individuals and follow them over time, perhaps thinking about interventions that they might find helpful, would be of considerable benefit

Sir John Bell

The Bevan Commission, in its capacity as the leading independent think tank for Health and Care in Wales, were asked to make recommendations to Welsh Government on how Wales should set about establishing a voluntary Long COVID Registry.

At the time of writing the report, the Office of National Statistics (ONS) identified that there were 1.2 million (1.9%) people living in private households in the UK who were experiencing self-reported Long COVID symptoms, with these symptoms adversely affecting the day-to-day activities of 775,000 people (64% of those with self-reported Long COVID).

This report aims to provide an overview of the exploratory desktop research, key findings, option appraisal and recommendations from the Advisory Board and wider stakeholders to Welsh Government.

Key recommendations include:

  • Establishing a Long COVID registry for Wales in order to address unanswered questions, provide long-term monitoring of the disease and improve the management of long COVID.
  • A Long COVID Registry that informs research, service improvement and a greater understanding of the disease for patients and their experience as it evolves.
  • Collaboration with patient groups and end-users as an essential component in the co-production and development of a Long COVID Registry for Wales.
  • A self-referral mechanism to promote equitable access into a Long COVID Registry.
  • Greater clarity and coordination across agencies and organisations to realise the full potential of a future Long COVID Registry in Wales.
  • Utilisation of existing digital infrastructures in Wales and data linkages to connect current systems, databases and avoid duplication.
  • Adoption of the Prudent Healthcare concept, and adherence to the prudent principles in order to derive the best value from a Long COVID Registry.

 

quotation icon

There are people out there who are genuinely suffering and struggling, not understanding what is going on with them, and they would be only too pleased to participate in a registry

Patient Representative