A reflection on the impact that the PPI team’s contributions have had so far:
It has been a busy time since I joined the PPIE team with IMAB-Qi with lots of opportunities to bring the views of ordinary people to the study.
This has included reviewing documentation such as questionnaires and leaflets that will ultimately be sent to patients taking part in the study, as well as testing and commenting on various online systems such as the study website and the patient database. I also attend regular meetings with the research team to comment from a patient’s perspective on plans and practicalities for implementing the study. We are in a unique position to really know what will work and what won’t.
One very interesting task I have been involved in was commenting on and supporting the design of a poster to be displayed in the GP surgeries that are taking part in the IMAB-Qi feasibility study.
The purpose of this is to raise awareness of the study and also the concept of taking medicines correctly. As a result of visiting my GP at that time I felt that paper posters do not work but that a digital poster to be shown on the TV screen that many surgeries have would. A colleague suggested some excellent wording and we commented on the look of the poster which was then changed in line with our suggestions. Originally it was going to feature a QR code for further information. However I felt that people, whilst sitting in the waiting room, would not scan that. My suggestion of good old fashioned leaflets was taken forward by the team.
When I am involved in PPIE work I always ask “Can I see where I have been?”. By this I mean can I see my suggestions, for example in the final versions of documents? The answer as far as IMAB-Qi is concerned is “Yes definitely!”. Generally the suggestions that I and my colleagues put forward are implemented and I feel the end product is better as a result.
Being able to see that our suggestions are taken up whenever possible is important because we give a lot of time to PPIE work and we take our role very seriously. If we could see no impact or improvement as a result of our involvement, it would all feel rather pointless and disheartening.
One of the best things about being a PPIE member is when research team members are very engaged in discussions with us in meetings, treating us as equal partners and voluntarily asking us what we think. I never feel that they are paying lip service to our contribution. Getting a verbal or written “Thank you” is very gratifying as is a researcher actually saying how our contribution has helped.
PPIE is relatively new in research and there are some researchers who are sceptical about its value. It is therefore important to identify and capture tangible evidence of the value of PPIE contributions to the end result, not least the direct impact for members of the public who will benefit from the research.