The Patient Experience Research Centre (PERC) at Imperial College London are developing research to explore and understand people’s views about, experiences of and behavioural responses to the new coronavirus (COVID-19) outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly - for example in mathematical modelling and policy - we launched an online community involvement initiative on VOICE that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement. This article shares an update on that initiative, the insight that we captured and what we hope to do next.
Between 6 and 15 March 2020, we distributed an online feedback form, hosted on Qualtrics, to existing public partners who support our research at Imperial and the wider general public via email, WhatsApp, social media (Twitter) and via VOICE-global. The online form comprised three main sections that aimed to 1) guide our research priorities and design; 2) capture the public’s priorities, preferences and unmet needs, and 3) shape our ongoing community engagement and involvement activities, by exploring people’s experiences of the outbreak and opinions on research. Questions were piloted and adapted following discussions and input from 7 members of the public known to the research team prior to distribution.
“Community involvement and engagement is a crucial part of outbreak response but is often overlooked in the early days. Building on our existing relationships with the public and patient groups we have been running online engagement activities to help guide our research and identify the needs of different communities. We feel this is an important step in building trust between researchers, public health responders and local people.” Professor Helen Ward, from the School of Public Health and Jameel Institute at Imperial.
We received responses from 420 people; over half of these signed up to be updated about and/or involved in our ongoing work. 73% of respondents described themselves as members of the public, with smaller numbers of health care professionals, researchers and students. Respondents included a range of ages and backgrounds; one third reported living with a current or long-term health condition or disability; one third had caring responsibilities.
While vaccine development was considered the most urgent research priority for many respondents, almost all (95%) also agreed that social studies exploring the public’s experiences, risk perceptions and behaviours during this outbreak was necessary and important.
They described how such research could:
Other recommended areas of research included:
The leading issues raised by respondents were:
Respondents’ described feelings of concern, confusion and, in some cases, panic as a result of these communication and information challenges. Others shared their frustration that there was nowhere to post their concerns or questions, which was not limited to those considered to be most “at risk”. Respondents wanted more detailed and bespoke practical guidance about their risk and how best to prepare and protect themselves and their loved ones. Almost half (47%) wanted to hear about the latest research on the virus, and 45% wanted a dedicated internet portal where they could access the latest information and trusted guidance. Making information more accessible to different communities, including those who are not online and those who have English as a second language was also highlighted as a priority. It is crucial that communities can access and understand all relevant information relating to the outbreak so that they can plan, prepare and respond effectively.
The respondents identified a wide range of groups who should be involved in socio-behavioural research looking to understand people’s experiences, perceptions and responses to the COVID-19 outbreak. The most frequent suggestions were for people who are believed to be at risk of more severe infection because of their age or other underlying health conditions. However, a large majority also outlined people who are vulnerable in other ways (physical or learning disabilities, mental health conditions, living alone, facing homelessness, prisoners), as well as those who are believed to be at lower risk (children, teenagers and young adults).
Other communities put forward included ethnic minorities, migrants and those who have English as a second language – a need that has been reemphasised recently by the Guardian – urban communities and people living in crowded housing, people who live in rural or isolated settings, those who are not online or on social media, subpopulations who may experience racism, renters and landlords, and people who have experienced COVID-19 and recovered.
A number of work sectors were also proposed with health workers being most frequently suggested followed by care homes and carers, gig economy workers, low income groups, teachers and educators, other front-line key workers who maintain contact with the public and unions, employers and business leaders.
We must engage with diverse communities during the outbreak response and COVID-19 research. These groups can help improve the assumptions made in our research and shape the public health narrative, the language and communication methods used, the infection control measures proposed and the support that is offered.
Our online exercise has already helped inform a YouGov Population Survey that we ran between 17–18 March with 2,108 adults in the UK (preliminary report available here). That survey was important in building the case for greater restrictions and showed the need for more financial and social support for those who were being asked to self-isolate, for example. We are now building on this work to facilitate greater involvement of community members in COVID-19 research and responses to the outbreak.
We have also posted a full insights report ‘Online Community Involvement in COVID-19 Research & Outbreak Response: Early Insights from a UK Perspective’ on the MRC GIDA report website. This has been actively shared with other research communities and policy makers involved in the COVID-19 response. You can follow some of the tweets here and here. The report is the latest in a series to be released by Imperial’s COVID-19 Response Team – including the MRC Centre for Global Infectious Disease Analysis (GIDA), Abdul Latif Jameel Institute for Disease and Emergency Analytics (J-IDEA).
There have been calls for the views of patients and the public to be included in policy responses to COVID-19. We hope that by sharing the insights from this online initiative, more researchers and policy makers will respond to the concerns of UK citizens and establish wider public and community engagement going forward.
Our online approach was unique in involving and mobilising communities remotely prior to the UK lockdown on 16 March 2020. Now that restrictions on travel and face-to-face contacts are impossible, such online approaches to involvement are building momentum, but our initiative has shown that much more is needed. Online forms and discussion forums offer one way to gain rapid public insight early on in an outbreak, providing accessible versions and alternative languages are also offered. While some improvements are needed, the combination of multiple-choice and free text questions as used in our online involvement exercise allows for new voices, ideas and suggestions to be heard. And with more than 200 respondents consenting to be contacted, it can also help to build new connections with community members who wish to play a role in shaping ongoing research and engagement activity. However, to really influence a pandemic response, we believe 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:
Our priority now is to continue to optimise the process of community involvement in our COVID-19 research and response planning more broadly, ensuring the voices, experiences and concerns of those who may be most affected by the outbreak are heard.
“It is our duty as researchers, and a research community, to ensure patient and public perspectives are not forgotten as we rapidly develop our plans or deliver innovative solutions in response to the outbreak.” Dr Philippa Pristerà, report author and research associate in the School of Public Health.
We will continue to provide updates about our COVID-19 Community Involvement page at imperial.ac.uk.
Full and summary reports are available on Imperial MRC GIDA web page - multiple languages available.
@MRC_Outbreak are releasing all COVID-19 reports from Imperial College highlighting our research and response to the outbreak. Their website is a good place to visit for further updates. They also release regular videos to their YouTube playlist with background information on the COVID-19 reports and the status of the outbreak.