Involving patients, carers and the public in COVID-19 research: the integrated Birmingham response

Research communities in Birmingham, including public contributors, rallied to respond to the rapidly changing needs and priorities of health and care services and adapted their ways of working. Effective, creative, and timely collaboration between Birmingham-based NIHR Infrastructures ensured that COVID-19 research projects have benefitted from unique insights/perspectives of patients, carers and the public throughout the pandemic.  

This was supported by the development of:

1. Virtual PPI Support: PPIE Leads in Birmingham have supported research teams on all aspects of PPIE during COVID-19 via regular online ‘drop-in’ sessions. This has included providing advice, grant application support and signposting to resources to continue ensuring the public are involved throughout the research process.  

2. Rapid Response PPI Panel for COVID-19 Research: To ensure researchers were able to incorporate meaningful public involvement into projects, PPIE Leads set up a COVID-19 Rapid Response PPI Panel. Twenty experienced public contributors from established public involvement/patient groups and networks in Birmingham were recruited to respond to fast developing COVID-19 projects and urgent funding calls. Panel members were all supported to work virtually.  

“I really believe that the patient and public voice should continue to be heard and taken notice of even in these uncertain times. It is only through research that things improve, so it is more important that research continues even if things perhaps may have to be done differently to ensure more rapid action.”

Public contributor

Our patient and public contributors supported a variety of key COVID-19 research projects, including:

Public Health England (PHE) 

Birmingham public involvement communities worked together to support research from PHE, facilitated by the Health Research Authority (HRA), on a project evaluating home antibody tests for COVID-19. Thirteen public contributors reviewed and provided feedback on the research design and study documents which participants would receive. Feedback was provided to PHE within a timeframe of just 48 hours. PHE’s Professor David Wyllie stated that feedback from public contributors was valued greatly and that the contributions “[…] turned something slightly viable into massively viable”.  

CATALYST Trial 

CATALYST is a Birmingham-led trial to evaluate drugs for the treatment of severe COVID-19. Seventeen members of the Trauma, Accident, Burns and Critical Care (^TrABC) PPI Group worked with researchers to provide a fast-track PPI review of the study. Contributors provided feedback on the study design, ethical considerations and patient-facing documentation. Public contributors were supported throughout this 24-hour review by a PPIE Lead, and researchers received valuable insights and feedback which shaped the project.