You may want to set up your very own PPI group, or there may already be one in existence click here for details on existing BRC PPI groups but the basic principles here are the same.
Why do you want people involved?
This might seem like an obvious question but it is essential to be clear in your own mind and to communicate the remit of your involvement to any PPI group you work with. Do you want people to give you advice on interview questions to ensure that you are asking the things that really matter to patients? Do you need help with your lay summary?
Here is an example of a well written lay summary
Conversely, you must be clear on which bit you do not want feedback on and the things you cannot change. Ideally you should be open to all ideas and be willing to respond to them. But, if you know that you have to use a particular set of images for a publication, make sure that you PPI group know this and don’t waste their time reviewing something you cannot change. People can tell very quickly when their involvement is tokenistic or that their advice is being ignored and as well as being extremely disrespectful, it will put them off from working with you again.
Who are you going to involve?
- Do you need people with a particular condition?
- Carers of people with the condition?
- Men/women, young/old? Or just the general public?
- Is there anyone you definitely need to exclude?
How will you find them?
- Is there a pre existing PPI group you can use?
- If it’s a patient group, can you recruit via a clinic?
- Can a charity help with recruitment?
- Are there local community groups you can approach for help?
How will you involve them?
It is vital to be clear on exactly what you need from members of your group. It is important to remember that there are different ways to involve people and that may not mean going along to or hosting formal meetings.
- Do you need formal meetings? If there is a public event coming up, can you go along to that and interview people? If there are patients coming in for a clinic, can you speak to them after their appointment and get their feedback on your work?
- If you are having a meeting, is it a one off or will you need people to commit to coming in once a month for the next year?
- Will you be communicating via email?
- Depending on how long the involvement will be, you may need to formalise this with tools such as the Involve Terms of Reference template and our Advert Template (Microsoft Word)
- Do you have access to a free space? If not, do you have a budget for room hire?
- How will people travel there?
- Is it accessible?
- Do you have a budget for catering?
- Click here for information on booking space at the BRC and here for information on the GSTT Hospitality team.
- How often do you expect to meet?
- How long for (it’s important to allow enough time for discussion. Agendas PPI groups cannot be managed as you would any other meeting and while it’s always best to try and stick to timings, people may want to talk about things that are not on the agenda but are related to their condition or their experience as a patient and you need to allow for this.
- What time do you want to start? If you have elderly people on your group, they can only use their Freedom Pass for free travel on National Rail and some buses between after 09:30 so if you want to meet early in the morning there may be travel costs. If you are going to be involving people who have young children you may have to work around school hours or provide child care.
How will you support them?
- Will you provide any training? The BRC provide free training to patients and the public from Lambeth and Southwark. Click here for details and registration.
- Who is their key contact and how can they get in touch with them?
How will you pay expenses?
You will need to agree a budget for travel and catering at the least. You may also want to cover carer costs, child care etc. The Involve website has guidance on payment and recognition, or you can contact our team if you want advice about this specific to Guy’s and St Thomas’.
How and when will you feedback? (Them to you, you to them)
It is vital to ensure that feedback is built into your plan right from the start so that anyone who is involved in the research project is kept up to date during and at the end. Again, expectations must be managed so if there is likely to be a long gap between gathering data and publishing results, make sure that this is communicated so that people aren’t left frustrated.
How will you acknowledge them? (Thanks & recognition)
- Some research projects pay people to be involved in research and INVOLVE have guidance on this. It is essential to be clear on what can and cannot be paid to any patients or members of the public who work with you. Guidance on this and how payment may affect benefits can be found on the INVOLVE website here and here.
- As well as financial recognition you may decide to send thank you cards, provide gift vouchers or even name lay people in publications.
Practical issues (admin, language, directions)
- Who will take minutes, order refreshments etc.?
- Do you need an interpreter?
- Who will facilitate meetings? How will you make sure that everyone gets a say?