Integrating patient and public involvement during the COVID-19 pandemic: lessons from COVID-clinical neuroscience...

The COVID-19 Clinical Neuroscience Study (COVID-CNS) was a large UK research initiative investigating the clinical features, outcomes and biological mechanisms behind neurological and psychiatric complications from COVID-19. Through partnerships and patient enrolment, the study aimed to inform patient care and treatment selection to improve outcomes.

Here, we evaluate the methodologies and results yielded from patient and public involvement (PPI) efforts within COVID-CNS, an important element of the research cycle which introduces patient perspectives and enhances research relevance.

PPI involvement in the study heralded many accomplishments and contributed to the success of the study, in particular improving accessibility in study design and tools reducing patient burden; inclusivity and accessibility of the study in terms of recruitment; and in the plethora of assets to maximise dissemination of the study findings. Several challenges were identified, including barriers to diversify the PPI panel, difficulties faced by panel members to engage in PPI activities due to personal circumstances, as well as significant obstacles caused by the COVID-19 pandemic. Specific outcomes from this evaluation have included: identifying diversity gaps in the PPI panel, a deeper understanding of the impact of the PPI panel, including creating and adapting patient material, dissemination documents and raising awareness of the COVID-CNS study.

Despite challenges, this evaluation has demonstrated the critical role of PPI within studies, particularly in this case, for strengthening understanding of how to alleviate the burden for patients of post-COVID-19 sequelae. Sufficient budget must be made available for PPI, and PPI panels must be accessible to a diverse range of people, whilst remaining adaptable to external circumstances.