PPI in the pandemic
During this pandemic, it might seem hard to think about involving patients and carers, because you can’t meet them face-to-face. But it’s not impossible to involve people remotely – and sometimes it can even work to your advantage. And many patients and carers have said that they want to be involved now more than ever.
Throughout this website, we’ve given you suggestions for how you can involve people virtually. For example this page helps you think about planning a PPI activity, and this page has guidance on running the activity. This case study includes information about how one lab-based researcher used a Zoom meeting to involve people.
Here’s a quick summary about involving people online – and what to do if you can’t involve people in this way.
What are the advantages of involving people online?
It’s cheaper than bringing people together face-to-face
It can be quicker – for example it can be much quicker to run a discussion group online than to plan and run a big face-to-face meeting
It enables you to bring people together who are in different geographical areas
It can be a preferred option for people who can’t travel or who find travelling difficult
What are the challenges?
For some groups of people, virtual involvement is extremely hard or impossible – e.g. some people with learning disabilities, people who don’t speak English (if you are running online involvement activities in English), people who don’t have access to the internet or who don’t feel confident using social media
It can be harder to build a rapport when you don’t see people face-to-face – there are less informal opportunities to chat and you can’t see their body language very easily, if at all
On video calls, some people may not want to (or may not be able to) turn their camera on
Tips for involving people online
Preparing for the meeting
Choose a platform that is easy to use – we advise using Zoom as it’s the platform most people are familiar with
Email invites and guidance on how to join the meeting, and any other items like the agenda or pre-reading. Offer to speak to people in advance if they haven’t used the platform you are using, so that they can try it out.
Ask people to join a few minutes before in case there are any technical issues. Have a list of participants’ phone numbers so you or a colleague can call them if they’re having problems.
Make a list of questions or prompts to facilitate discussion and to ensure the session has a clear purpose
Try to have at least two people to facilitate the session – one to chair and one to provide technical support. If notes of the session are needed, get someone else to do this or plan to record it.
If you are planning breakout rooms, ensure you have facilitator for each room
Plan in some tea breaks – one every hour or so if you are planning to run a session that lasts longer than one hour
During the session
Make sure you welcome people
Introduce yourself and get everyone else to do the same – just their name and maybe one thing about them.
Make people aware of the chat functions and how they can join in
Get permission to record the meeting so you can spend more time listening rather than making notes.
If the meeting is longer than one hour, ensure there is a break part-way through
Try to think of quieter members and ensure everyone has a chance to speak – encourage people to use the chat function
Keep it simple! Avoid overwhelming people with too much tech and limit the amount of tech you’re relying on, including PowerPoint.
More information
The NIHR School for Primary Care Research has produced guidance entitled ‘how do I hold a PPI meeting using virtual tools?’. This can be downloaded here.
What else can you do if you don’t want to (or can't) hold a virtual meeting?
If you can’t involve people in a virtual meeting, you could try:
Talking with people via email – it’s familiar and accessible to many people
Teleconferences – using a freephone number. These are great for people who don’t feel confident using online platforms or those who don’t have easy access to the internet
Individual phone calls. Although this is time consuming, it’s a really good way to reach out to people who may not be able to talk online
Thanks to the Shared Learning Group on Involvement for their help in putting this guidance together.