Engaging with Patients and the Public during COVID-19

In spite of new challenges related to COVID-19, our PPIE activities have been very positive. Our Involvement Manager shares her top tips for making patient and public engagement and involvement possible, while social distancing.

The National Institute for Health Research (NIHR) is committed to continuing PPIE activities in spite of social restrictions, recently launching the Centre for Engagement and Dissemination (CED) to support this. We echo this at the Newcastle BRC, because our research is not possible without the involvement of the people it is seeking to help. During lockdown, we have:

1. Hosted our first Virtual Coffee Morning, welcoming over 90 participants. This event highlighted research from our MIlkMAN study, as well as giving attendees a chance to discuss muscle ageing, nutrition, and ways to maintain fitness during lockdown.
2. Supported a national NIHR project aiming to diversify those involved in COVID-19 research. The project is developing a national campaign to explain COVID-19 research to underserved groups. We helped to identify  North East participants to provide a public/patient perspective and steer the campaign’s development.
3. Started planning for a new Podcast series aimed at the general public, which explores the people behind our BRC research.

But as we plan ahead for more activities of this kind, we look to what we have learned so far to make these even better. Our Involvement Manager Kasia Kurowska shares her five do's and don’ts for online PPIE:

• DO help people feel prepared. Many of our public contributors are older, perhaps trying out digital meetings for the first time. Leave time ahead of meetings to allow people to familiarise themselves with the platform and joining instructions, including digital meeting etiquette.
• DO consider whether the ‘chat function’ is adding or detracting from the main meeting. Feedback from our public contributors so far is that chat functions deter from the main meeting discussion and often include questions answered in the main presentation.
• DON’T assume people (especially older people) won’t join in with digital engagement. We have seen increasing numbers of people embracing online meeting technology to connect with family and friends, and this is an opportunity to encourage many more to get involved in research.
• DON’T shy away from using the functions on offer with digital platforms (apart from maybe the chat function). When we were organising the Virtual Coffee Morning, I thought breakouts and polls might confuse or deter some of our public contributors, but they worked very well and brought a more personal experience.
• DON’T forget feedback. Failure to follow up continues to be the biggest complaint from public contributors. We are all immensely busy, and much COVID-19 research is fast paced and changing, but remember that public contributors are also balancing personal challenges to help us out at this time, and feedback ensures we’re recognising their role in research. We aim to feedback within 2-4 weeks from a meeting, even if there is not much to update.