Our top five COVID-19 projects with patients and the public this year

"When decisions are made without the people affected – they are usually the wrong decisions." Mandy Rudczenko, Co-Chair, Winter planning, Patient and Carer Reference Group

It’s critically important that we work with patients and members of the public. This partnership helps ensure our work make sense and drives our focus to topics people really care about. Giving public and patient views status in our own work also demonstrates the importance of others including a greater diversity of voices in theirs.

Some might say that the middle of a global pandemic isn’t the best time to gather reflections on your work from thousands of people across the UK and beyond. We say that during a global pandemic, ensuring that medical science is guided by the priorities and concerns of the public is more important than ever. We did what we could in the time we had – the need for a rapid response shouldn’t be a reason for not including public and patient voices. Read on for a countdown of the top five times we’ve worked with patients and members of the public this year…

1. Life Support

With daily reminders of the numbers of people dying from COVID-19, there is no doubt that the pandemic has made conversations about death and dying even more important. Life Support was developed to replace the many face to face events that were planned to run across the country this year as part of our The Departure Lounge project with The Liminal Space. It aims to get people talking about dying, and what it means to die well – with our surveys finding that six in ten people felt they knew little or nothing about the final hours of life. Find out more at www.life-support.uk

2. A FORUM for patient and public involvement 

For us it’s really important to share what we learn with others. Our cross-sector FORUM network brought together people from industry, academia and the NHS to discuss what works and what doesn’t when working on public and patient involvement – and how to ensure it remains central to research throughout and beyond this pandemic. Read the meeting report. 

3. Planet DIVOC-91

Young people have been some of the worst impacted by the societal fall-out from the pandemic, with schools closed, exams cancelled, and being cut-off from their peers. We worked with Wowbagger Productions and Vocal to empower young adults from across the world to make sense of the pandemic through co-creating an online comic with famous comic artists and storytellers. Each issue’s themes and stories are developed by an editorial panel of 16-24 year olds from the UK, India and South Africa following interviews with leading scientists drawn from the Academy Fellowship and our grant awardees. 

Alma, one of the young people in the UK group, sums up what this meant to her: “As a young adult I have never had the chance to voice my opinions before. This project has taught me to have confidence in those opinions and my ideas and has given me a chance to discuss them with high status figures. It has given me motivation when I had none, hope when I was running out... [it is] one of the main reasons why the lockdown was bearable for me.”

See the full Planet DIVOC-91 story online.

4. COVID-19 and mental health

COVID-19 was never going to affect just people’s physical health. We have been pressing to keep mental health high on the research agenda since April, driven by a steering group of patients, doctors and researchers, and surveys of more than 3000 people. Kate King MBE, steering group member, said: “We need to know about people actual experiences, we can’t assume we know what’s going on in their lives… Real engagement with people with long term conditions like mental health is not just a nice idea, it’s a human rights issue”.

Read their top tips for protecting your mental health – as relevant today as it was in April – and explore the full survey results to understand people’s pandemic concerns, from anxiety and isolation, to money, exercise and social media.

5. The winter scenarios project

Back in March we were asked by the Government Office for Science to rapidly review how the UK must prepare for a challenging winter, considering reasonable worst-case scenarios for rising COVID-19 cases, an NHS backlog and the possibility of a flu epidemic. With less than eight weeks to turn this report around, we set up a Patient and Carer Reference Group, and held online interviews and workshops, including people from Black, Asian and minority ethnic groups, and patients or carers who had received letters asking them to shield. Our people’s perspective was published alongside the full report – catch up with the coverage from BBC News, Financial Times, The Guardian and more.

Where next?

Looking ahead to next year, we will be working to bring the public, patients and carers from these projects together again to explore the continuing impact of COVID-19 on our lives under the banner of PAGE: our People’s Advisory Group for Emergencies. We hope to have more discussions on living with COVID-19, misinformation, and trust in science and would love to hear from you if you are interested in joining the discussion.  

To hear more about our work engaging patients in the public during the pandemic you can also watch the session from the Engage2020 conference. 

Patient involvement, public and patient engagement, PPI – there are lots of different names for this way of working. But we don’t mind what you call it, so long as you work in real partnership to get to the true purpose of this work: better health outcomes for everybody. It’s part of our core objectives, and part of everything we do.

We need your help to include more public and patient voices in our COVID-19 work and beyond. You can donate to support more work like this here.