28 Jun 2020

The consultation was undertaken by a collaborative team of researchers, clinicians and public involvement members from the CSI, University of Sheffield, University of Hull and University of Bristol.  

Using the CSI online public involvement forum (www.csipublicinvolvement.co.uk), email and telephone, the team consulted members of public involvement networks across four palliative care research groups in England. These networks include individuals living with serious illness, and their family members and/or informal carers.  

44 patient and public involvement contributors responded to the consultation. Their concerns and research priorities centred around four key areas: reduced professional support; strains on informal care networks; risk of reduced quality of care; and increased loss, grief and bereavement.  

The team have now published a full report about this consultation and are sharing the consultation findings widely within their networks of palliative care researchers and clinical academics across the UK to shape and inform new and ongoing palliative care research projects. However, it is essential that, going forward, people affected by serious illness can continue to contribute to the palliative care response to COVID-19. 

This was the first time these four palliative care public involvement groups have worked as a collaborative network across organisations, and the team noted the benefits of sharing expertise and resources. By offering diverse and flexible opportunities to respond (online forum, e-mail, phone) they were able to facilitate involvement in a way that suited different individuals, while usual face-to-face approaches were not possible. These experiences resonate with previous recommendations for more joined up and collaborative approaches to public involvement in research, and the potential importance of flexible and virtual involvement opportunities.