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A response to COVID-19: Where there’s a will, there’s a way!

We are all living and working in extraordinary times. Everyone is having to adapt and respond very quickly to changing circumstances: this includes self-isolating and working from home.

For academic and clinical colleagues, adapting to the new working environment is made easier by the fact that most people already have experience of remote working. Discussions within project teams frequently take place over email, and video conferencing tools have been invaluable in connecting experts from different sites working on the same project.

How does this changing situation affect public involvement activities though?

As Community and Public Involvement Lead for NIHR ARC WM, I have seen how restrictions from COVID-19 have had an immediate impact on our activities. The changes I have seen include:

  1. Postponing/cancelling face-to-face meetings with public contributors, many of which take place on university campuses or venues, such as community centres, that have now closed.
  2. Suspending engagement events, many of which have been cancelled.
  3. Change to clinician/researcher working arrangements, which may restrict their capacity for research activities.
How can we overcome the challenges?

The changing circumstances do not mean that we have to cease all public involvement activities. Although we should limit social contact, which rules out face-to-face meetings, there is a wealth of technologies available to us that can help sustain involvement activities with our public contributors. Of course, we can still use email and telephone as reliable methods of communication, but for group discussions and dialogue we should not be afraid to explore alternative methods of involving public contributors, such as video conferencing. In this time, which offers so many challenges, we should all be prepared to step out of our comfort zone and try something different.

I’m by no means an expert in this area, but over the last week I’ve had to adapt quickly to new circumstances. Here’s my top tips so far:

  1. Keep everyone in the loop. Things are changing rapidly and we are all having to adapt to changing circumstances. Communicate with public contributors involved on projects as soon as possible, just to let them know what’s going on – even if it’s just to say that you don’t know!
  2. Explore alternative methods of communication. If you’re used to meeting with public contributors face-to-face, think about alternative ways you can communicate. Can some activities take place over email/ post or perhaps could you arrange telephone calls? Just because we’re familiar with a particular way of working doesn’t mean it’s the only way of working.
  3. Be prepared to step outside your own comfort zone. I’m not that confident at using digital platforms (confession - I spent 15 minutes yesterday trying to figure out my Skype ID), and I really don’t like videoing myself, but I’m just going to have to deal with it.
  4. Consider arranging a video conference. If you are used to meeting a group face-to-face there are various platforms available that support video conferencing (some allow up to 200 participants). Explore with your public contributors whether this would be an option and what support they would need (e.g. what instructions/guidance they might need; are there any ground rules you need to set).
  5. Consider inequalities. Not everyone has internet access/a smart phone/confidence using digital technologies and some people might not want to do this. Consider whether using digital technologies is appropriate for involving people in your research and potential issues of involving some people using digital technologies and not others.
  6. Plan, plan, plan! Whatever method you choose (email, telephone, video conference), approach involvement with the same effort as you would normally.
  7. Be respectful. Although the methods of communication might be different, remember that you are taking up contributors’ time. If you usually offer honoraria payments, these should still be offered.
  8. Get feedback. If you’re changing your ways of working, make sure you get feedback from public contributors and reflect yourself on how things went. What worked well? What didn’t work? How can you improve for next time?
  9. Report what you’ve done. We’re navigating unchartered territories here, so capturing any learning is really valuable. It might be that some approaches are really successful; all the more reason to share the experiences with others.

The good news is that the Public Involvement and Engagement Community is coming together to share resources/information to help ensure that we maintain public involvement activities through this period. Over the past few days, there have been some useful resources provided - see the box below.

Let us know what you’re doing.

Steven Blackburn, Research Fellow, Patient and Public Involvement and Engagement Regional Lead for Public Involvement in Research, NIHR Research Design Service is curating a spreadsheet on alternative approaches to PPIE activities where you can record your experiences of virtual public involvement activities. Contributions are most welcome!

And finally…

I love the Benjamin Franklin quote: ‘Out of adversity comes opportunity’. Let’s hope that through these challenges we find alternative, different and maybe even better ways of working with public contributors.

  1. NIHR INVOLVE has produced this useful ‘Guidance on the use of social media to actively involve people in research’.
  2. NSUN (National Survivor User Network) has produced this document on ‘Keeping in touch when we can’t meet each other face-to-face’. This resource includes some guides to setting up small group discussions virtually and organising video conferencing.
  3. Sarah Knowles (Senior Research Fellow, University of York) is curating a useful document on Digital and Remote Co-Design. In addition to sharing resources, this document has some reflections from contributors on different platforms and methods.
  4. NCCPE (National Coordinating Centre for Public Engagement) is curating an online document for ‘Meaningful Engagement for Online Events’. This includes some ‘top tips for organisers and participants of online events’ and a document for people to share experiences of using software when engaging the public.

Magdalena Skrybant, PPIE Lead

Fri 27 Mar 2020, 12:00 | Tags: COVID-19, Magdalena Skrybant, PPIE