Report 14 - Online community involvement in COVID-19 research & outbreak response early insights from a UK perspective

The Patient Experience Research Centre (PERC) at Imperial College London is developing research to explore and understand people’s views about, experiences of and behavioural responses to the outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly PERC launched an online community involvement initiative that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement.

One of this study's conclusions is that trusted channels for rapid involvement need to already be in place in order to amplify the diversity, speed and impact of community input. This could mean:

• Rapid coordination of existing community or mutual aid groups; and/or
• Establishment of a new network of community champions and “explainers” who assemble during a public health emergency to both support the distribution of public health messaging and guidance and act as a community spokesperson to capture their concerns and unmet needs in order to guide the ongoing response.

This research further shows that social studies exploring the public’s experiences, risk perceptions and behaviours during this outbreak were necessary and important according to 95% of the respondents. Such studies could:

• Improve the way the current outbreak response is planned and implemented;
• Improve the way information and guidance is provided to and understood by the public;
• Optimise the support provided to communities and vulnerable groups; and
• Improve future outbreak preparedness.

Other recommended areas of research included:

• Understanding the role of the media in influencing how people react and respond;
• Furthering our basic understanding of the virus – how it spreads, who it affects the most and why, and whether people achieve and maintain immunity after being infected;
• Critiquing the UK’s response to the pandemic against that of other countries; and
• Ensuring lessons can be learnt from this outbreak to better equip us for future outbreaks, and public health emergencies in general.