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Reading: Recommendations for a Long COVID Registry: A Prudent and Integrated Approach


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Recommendations for a Long COVID Registry: A Prudent and Integrated Approach


Fern Davies ,

The Bevan Commission, Wales Swansea University, GB
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Ilora Finlay,

The Bevan Commission, Wales Swansea University, GB
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Nick Rich,

The Bevan Commission, Wales Swansea University, GB
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Helen Howsen

The Bevan Commission, Wales Swansea University, GB
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Introduction: Long COVID has had a profound impact on the lives and health of many people around the globe, with 1.5 million (2.4%) people in the UK alone experiencing self-reported symptoms.   Whilst the prevalence and long-term consequences of SARS-CoV-2 infection remain largely unknown, modelling suggests a significant increase of long COVID patients and consequent challenge for the health and care system during the next stage of the pandemic.   In response to this, the Bevan Commission were asked to make recommendations on how to set about establishing a voluntary registry for long COVID in Wales, in order to undertake long-term monitoring of the disease.

Aims and Methods: The aim of this research was to understand the UK context for setting up a voluntary long COVID registry and to make recommendations for a long COVID registry in Wales.  A multi-stakeholder advisory board of twenty-five members was established, with a diverse range of expertise.  Patient representatives were recruited to engage in the process of co-production, as aligned with the prudent healthcare principles . A qualitative and inductive methodology was adopted, supported by a multi-methods approach.  This included exploratory desktop research, observations of four advisory board meetings and expert interviews.  The multiple methods identified above contributed to the findings of this work and key recommendations. 

Key Findings: The main findings indicate that there are no known voluntary long COVID registries that have been launched within the UK.  However, the advisory board unanimously agreed the importance of a registry in Wales (or similar mechanism) for long-term monitoring of the disease and to facilitate research and service improvement.  Digital infrastructure and linkages were identified as essential in the development of a registry, yet findings suggested a current disconnect and need for enhanced co-ordination and interoperability between resources, databases and organisations.  

The need for co-production with end-users of a Long COVID Registry, such as healthcare professionals and patient groups, was an enduring finding during advisory board meetings, as was the need to promote equity of access and inclusion of a self-referred population.  Findings from the patient representatives specifically identified a feeling of abandonment and described care as ‘disjointed’, particularly when referred to multiple healthcare professionals, specialities and resources. This promotes the need for a prudent and integrated approach to make effective use of available resources and to derive optimal value from a Long COVID Registry in Wales. 


Conclusion: To conclude, this research identifies the importance of an integrated and multidisciplinary approach to improve the monitoring and management of long COVID and in turn address anticipated health system challenges.  This approach should be central to inform the development of a Long COVID Registry within Wales.  Digital infrastructure and linkages are key solutions to harness the technological capabilities within Wales and optimise the success of a registry.

Implications for applicability/transferability, sustainability, and limitations: This research has informed health policy decisions related to the effective care and research of long COVID in Wales.  It also provides valuable recommendations for voluntary disease registries moving forward.  However, it should be acknowledged that the research is only representative of one geographical context and healthcare system.


How to Cite: Davies F, Finlay I, Rich N, Howsen H. Recommendations for a Long COVID Registry: A Prudent and Integrated Approach. International Journal of Integrated Care. 2022;22(S3):487. DOI:
Published on 04 Nov 2022.


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