A tale of two viruses: COVID-19 and community – engagement and involvement in a time of national crisis (inc. links) #coronavirusuk

We are united. We are divided. We are together. We are isolated. We are community. We keep our distance.

What strange and anxiety-inducing existence is this? We spend our days and nights in two perpetual states of being at the same time. Shifting restlessly, guiltily between them. The world has become smaller. Our homes smaller still. We zoom not vroom to work. Neighbours, friends, colleagues look at each other from their homes. We live in bell-jars, muffled and troubled. The doorstep is no longer just a line that strangers cross to become guests. It is keeping an enemy at bay.

For this is a war. I have never liked fighting talk when speaking about disease or ill-health. But I have lost count of the number of times Government officials, doctors, scientists, patients have said to me: ‘There’s a war on.’ And they are right. It certainly feels like a war.

We queue at shops. Shelves are bare. Some food is rationed. The old and sick fear the worst. Streets are empty. Government Ministers and experts brief us every day. The media report numbers of dead and unwell like casualties on a front line. Is it perverse to say that I only begin to feel better when I hear the stories of these people? For then, humanity can prevail. Why don’t we hear more of their stories I wonder?

But there is another virus afoot. An infection that is causing people to come to their doors and windows in the evening and applaud NHS staff and volunteers; set up WhatsApp groups for their road so they can look out for one another. become NHS responders like my neighbour, Tom, whose been delivering food and medicines all week; call on those for whom social isolation is nothing new; phone mums or dads, sons or daughters more regularly. Yet, like any crisis, it can bring out the worst as well as best of us, whether it be stock-piling or people being abused in the streets. Fortunately, I see more good than bad.

I am not sure where or when this ends. They say we may have to get used to living with COVID-19 forever. But I hope this other virus – community – thrives and mutates until it is unstoppable. I hope that the medicines that quelled it in the past – underfunding, vested interest, ignorance – are found to be increasingly impotent. I hope leaders who have turned to the public in this time of urgent purpose will not turn their back on it when it is over. History doesn’t make me hopeful. It is a terrible thing to say. But it is true. I hope I am wrong. Maybe it is up to us to make sure the world really is different now. To be optimistic.

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Where this leaves public engagement and involvement in health and research is an interesting question. When I first looked a few weeks ago it seemed as if it was falling victim to the general disruption we are all experiencing. But gradually there seem to be stirrings with virtual groups being established and patient stories beginning to emerge in journals. I have been heartened by the measured and proactive way in which colleagues at NCCPE which orchestrates public involvement and engagement across the the university sector seem to be responding with a view to helping support a wider conversation about the challenges and opportunities: https://www.publicengagement.ac.uk/whats-new/blog/covid-19-adapting-change

Of course, many people will have all sorts of practical questions about their public engagement and involvement activities and I thought this brief guide from NHS England which attempts to deal with the main concerns was helpful: https://www.england.nhs.uk/participation/news/https://www.england.nhs.uk/participation/news/

Many of the organisations that have become households names in polling and analysing public attitudes are doing so on a weekly and sometimes more regular basis. There are also some lesser known names appearing. Including:

Cardiff University is running a project through the 35,000 strong HealthWiseWales network to find out how people feel about the impact of covid-19. Details here: https://www.cardiff.ac.uk/news/view/1849533-universities-launch-research-project-on-uk-attitudes-to-coronavirus-pandemic

Ipsos is doing a regular multi-country poll looking at different aspects of the crisis and people’s attitudes. On Thursday it was looking at people’s feelings about their nation’s ability to recovery from coronavirus. Apparently we are split. https://www.ipsos.com/ipsos-mori/en-uk/public-opinion-covid-19-coronavirus-pandemic

YouGov is doing similar and most recently has been looking at how people are changing their behaviours: https://yougov.co.uk/topics/health/articles-reports/2020/03/21/international-covid-19-tracker-how-public-opinion-

The Winton Centre based at Cambridge published a survey last week that got a lot of attention I think mostly because it seemed to support the media view that we could be going harder, faster and social distancing measures. https://wintoncentre.maths.cam.ac.uk/news/how-different-countries-are-reacting-to-the-covid-19-risk-and-their-governments-responses/. David Spiegelhalter, the Chair of the Centre, is always good value for money in his blogs about risk. For example: https://medium.com/wintoncentre/how-much-normal-risk-does-covid-represent-4539118e1196

There are some quite interesting surveys looking at changes in people’s shopping and other habits such as this one from BCG: https://www.bcg.com/publications/2020/covid-consumer-sentiment-survey-snapshot-3-23-20.aspx

ResearchLive has a list of those organisations doing attitudinal like studies although rather maddeningly it doesn’t include links although that may be down to my home technology: https://www.research-live.com/article/news/covid19-keeping-track-ofattitudes-and-behaviour/id/5067182

BMJ is doing an excellent job of covering covid-19 including commissioning some patient perspectives such as this one from Emma Doble who writes about what it is like living in a high-risk group for the virus: https://blogs.bmj.com/bmj/2020/03/23/emma-doble-living-in-a-high-risk-group-for-covid-19/https://blogs.bmj.com/bmj/2020/03/23/emma-doble-living-in-a-high-risk-group-for-covid-19/

Some specific projects have cropped up like the one by MQ and the Academy of Medical Sciences looking at the impact of covid-19 on mental health. Also see the work being done by the Mental Health Foundation and others as reported in The Guardian today. I anticipate more.

The National Institute for Health Research (NIHR) last week set up a single process for reviewing, approving and funding clinical trials on covid-19, details of which you can find here: https://www.nihr.ac.uk/covid-19/urgent-public-health-studies-covid-19.htm When I asked those behind it they assured me that public involvement would be part of the review process as it would be with all NIHR studies. This can only be good to fulfil the CMO’s commitment that all patients with covid-19 should be in trials.

Some are moving things onto virtual platforms such as the Imperial College public involvement team – it will be interesting to hear what emerged from this: https://www.voice-global.org/opportunities/coronavirus-outbreak-community-involvement/

News of what is happening in other countries in terms of involvement and engagement is often difficult to find but here’s an article from Harvard on the Italian experience: https://gking.harvard.edu/files/gking/files/covid-italy.pdfhttps://www.bbc.co.uk/news/uk-52062905

I shall write and update more. In the calmer moments.

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