#PPIcovid19: Making space for lived experience in Covid research

Thomas Kabir

“The entire population has lived experience of Covid-19”.

It was an interesting point, put in an email to me a few days ago. I am currently working with people at the Academy of Medical Sciences, the charity MQ, and many others on a project that aims to develop a set of mental health research priorities in response to the Covid-19pandemic. I was one of three people that were asked to provide input into the work from a lived experience perspective. The paper reporting the priorities is due for publication in the Lancet Psychiatry next week and an associated report about a public survey that was carried out by MQ and Ipsos MORI is currently being prepared.

Covid-19 has affected everyone. Like many others across the world I am now working at home. I am one of the lucky ones. I am not alone, my home is secure and sufficiently spacious to be cooped up in and I have a job that I love.

At McPin, we all thoroughly believe that drawing on the expertise that comes with lived experience can and does make research better. Over the last few weeks and months researchers across the world have refocused their efforts on the Covid-19 pandemic. The mental health impacts of the pandemic are huge and will be felt for years to come. It is vital that this research is of high quality and reflects the real needs of the entire population (almost all of which has been affected in one way or another).

Time and trust at speed

We have been doing our bit to try to make sure that the voices of people with  mental health issues are heard and can shape new research responses to the crisis. We have already contributed to a number of Covid-19 research proposals and projects from across the country. Of course, we want to do more.    

This is not easy. Many projects are being set up at breakneck speed. Key decisions are often made in a matter of hours. We know that good involvement in research takes time and trusting relationships need to be developed. And when there isn’t time – any involvement can degenerate into being tokenistic. Or not happen at all. This has not gone unnoticed. I have been seeing conversations on Twitter asking where the involvement in all this is. Hearteningly, I have also begun to see tweets that suggest this is gearing up. The mental health survivor community is very much doing their part, for example, see #madcoviddiaries on Twitter.  

Here are some reflections on the involvement and research that will need to be undertaken over the months and years to come:    

  • People with lived experience are an essential part of your team. Involve them in conversations at the very earliest stages of your project and share proposals with them, as you do all other team members.
  • We need to get creative very quickly. If you need to find people with lived experience to work with you as partners, take advantage of all the different technologies that you are using to keep in touch – Twitter will be the first port of call for many but Instagram could help reach a different audience and the NSUN bulletin is a very useful resource. Approach organisations such as ours that have well established groups that we can involve such as our Young People’s Advisory Group and Network as well as LEAPs (Lived Experience Advisory Panels).   
  • More than ever research needs to be ethically sound. There should be no cutting corners. Covid-19 does pose challenges in research terms. But this should not give anyone ‘cover’ to compromise ethical standards in order to ensure that research can happen quickly.    
  • Not everyone has been affected equally by the pandemic. For example, there is evidence to suggest that people from minority backgrounds may be disproportionately affected by Covid-19. Ensure that a strategy for ensuring diversity of perspectives is built into your PPI and other research plans.  
  • The pandemic and its aftermath will go on for some time. Probably years. We need to plan for this. We need to find people with experience of mental health problems and managing the consequences of Covid-19 now to be involved in research long term.    

These are, of course, just my thoughts. I am very grateful to all the people that are working so very hard to fight the pandemic. But coming back the beginning of my blog, the entire population has lived experience now of Covid-19. That gives all of us who care about meaningful involvement a huge opportunity to increase awareness of the importance of our work and the vital role of PPI in delivering high quality health research. Let’s do our best to take it.     

Thomas Kabir is head of Public Involvement in Research at the McPin Foundation