Involving London

Basics of PPI in Research

The following basic principles can help to develop good quality PPI and encourage a strong partnership between researchers and patient/ public representatives. More guidance on PPI can be found in our Guidance and Documents Section.

The role of the patient/ public representative, the time commitment and the tasks that you will be expected to undertake should be explained to you from the start, possibly as a role description or with an informal conversation. There may also be certain aspects of the study that you cannot get involved with and these should also be explained to you. This allows you to make an informed decision about whether you want to get involved or not.

You should feel supported in your role. This can be in the form of training, a key staff contact person to discuss issues with, other patient/ public representatives to talk to or a mentor. Sometimes you may have to tell the research team what kind of support you need, don’t be afraid to ask.

You may or may not be offered payment for your time. Different organisations have different policies so you may need to ask before you get involved. Most organisations will offer reimbursement for the following: travel, childcare and any out-of-pocket expenses such as telephone calls.

You should be asked for your comments and feedback during and after your involvement. This allows the researchers to make improvements to the way they involve people, and also allows you to raise any issues. You may also want to ask the research team for feedback on your role for your personal development.

All patient and public involvement should be acknowledged as part of a research study. This may be informally, such as saying thank you, or formally (depending on the level of input) by including your name on published research papers.