How should I plan a PPI activity?

Even if you’ve run a PPI activity before, it’s really helpful to have some help to:

• Plan the activity

• Welcome people and look after them during the activity

• Run the activity with you, or take notes

You could seek help from:

• The PPI or patient engagement team at your university

• The relevant charity

• An external facilitator, or a facilitator from another department

• A colleague

Where to meet

The patients and carers who helped to write this guidance felt that a visit to the lab is very useful, as it helps them to get a picture of what you do. But you can’t hold a meeting in a lab, so even if you are going to offer a lab tour as part of the activity, aim to:

• Find a meeting room which is accessible for the people you are involving – this might involve having toilets that are accessible for wheelchair users and near to the meeting room, or a room with natural light. Access is different for different groups of people, so seek advice from a relevant charity or other group.

• Make sure the meeting room feels comfortable

• Offer refreshments. Depending on the time of day for the meeting, this might just be tea/coffee and cake, or it might be lunch.

We recognise that face-to-face activities currently aren't possible, so consider meeting people virtually using video or phone conferencing. If you do this, remember to think about access needs. For example, some people will not have access to the internet, or may find it difficult to use it even if they do have access.

You can find guidance for running online meetings here.

When to meet

Seek advice about the best times to meet from the relevant charity or patient group. If you are meeting face-to-face, aim to avoid meetings that require people to travel early in the morning or in the rush hour. Whether you are meeting virtually or face-to-face, think about whether the people you invite will need to work around childcare or school drop off times.

How long to meet for

This will depend on:

• The needs of the people you are involving. Some people are unable to concentrate for long periods because of their condition or because of the medication they are taking

• Whether you plan to include a lab tour

We suggest no longer than two hours for any discussion, whether it is face-to-face, online or by phone.

Different groups of people will have different access requirements to enable them to take part in a PPI activity. It’s impossible to generalise about these – the important thing is to seek advice from the relevant charity and to ask people what their requirements are – and then to do your best to address these.

Many charities produce advice on how to involve people with the conditions they support.

Have a detailed agenda or plan that you and anyone helping you will use to run the activity. View an example agenda here.

On the day you may choose to depart from this, especially if you find that people want more explanation about what you're doing. But having a plan helps you to be prepared and to structure the discussion.

You should send people:

• Instructions about how to join the activity. If the meeting is face-to-face, this will be a map and directions – and ideally a photograph of the venue so that people know what to look for. If the meeting is virtual, send joining instructions. Give people an opportunity to practice joining a call if you are planning a virtual meeting

• A clear start time and end time for the activity

• Something brief about you (e.g. who you are more than just as a researcher)

• A reminder of what the research is about and what your long term hope for the research is

• Some information about what to expect – e.g. that there will be a two hour discussion, four-six people will be involved and that they don’t need any background knowledge in the subject

• Information about who else will be attending

• An invitation to let you know if people have any access or dietary requirements (if the meeting is face-to-face)

• Information about what payment they will be offered

• A contact number and email address if they have any queries

Don’t assume that people have Word, Excel or PowerPoint.

You could choose to send out some pre-reading (in plain English), but this should be optional.

An example email is here.

Try to speak with people before they take part in a PPI activity so that when they arrive (either in person or virtually) they will have at least one person they have spoken with before. You can do this by phoning people or sending individualised emails.

This was seen to be vital by the patients and carers who helped to write this guidance.