06 Oct 2023At ARC North Thames, we believe that research benefits from embedding people from outside the research community into the research process. Known more commonly as patient and public involvement (PPI), this process can enhance the quality of the research and help it to bring about positive change for society. It can also benefit the individuals who get involved. In this blog, part of our PPIE stories series, we hear from Rose McDonald about what PPIE means to her. This blog is based on a conversation between William Lammons and Rose McDonald.
What does PPIE mean for you?
Based on my work with NIHR ARC North Thames, I understand public and patient involvement to be when research is carried out with me, not just about me. In other words, my voice is just as strong and clear as that of clinicians and academics working on a project.
PPIE supports me to bring my ideas forward without feeling like they might not be right or acceptable. It matters that my voice is valued – for me and on behalf of others in my position.
How do you contribute to research?
As a person with lived experience of health conditions that might be concerning and worrying for me, I can bring my experience of those illnesses forward to clinicians. But I also understand that someone looking at it from a clinical point of view might not really ever see it in relation to somebody like myself, who is going through it every day.
For me, it’s also important that any outputs of these research projects are accessible to the public. They can’t include jargon, and they need to be demystified. I think it's a great thing - many times in my past, I’ve wanted to ask a doctor something that I felt I couldn’t ask or probe into, because I might not understand the answer. PPIE work brings us right into researcher and clinician’s arenas and helps us to keep them up to date in supporting people who are hesitant to discuss things with their clinicians, often for fear of a lack of understanding.
What would you say to researchers about why PPIE is important?
Researchers should practise PPIE because you can't work in isolation. You need to work with people with lived experience and the community around what you're researching. Without PPIE, research is sort of flat; that is to say, when you bring your research out, it will not touch on the areas and resonate with people who should benefit from it. Missing that mark means research won’t be as supportive or as strong as it should be.
Researchers can easily hit the mark by working together with patients and members of the public and looking at supportive learning and opportunities.
Communication is key, too. Getting out there, getting people involved, hearing what they have to say, hearing where they're from and their points of view…these simple steps can help to break down jargon and get to the heart of what matters to people with lived experience and their communities. If I can bring up what's happening to me and a clinician can then say whatever they need to say in a language we can both share, we can find an understanding and move forward together.
What are examples of “good” PPIE?
Good PPIE can take many forms. It can be governance. It can be casting the net wide via surveys to reach new members of the public and identify different areas of need and views. It can also be collaboration and working with other people in groups or one-to-one in interviews to look at topics and break down the jargon for everyone.
But the most important thing about PPIE for me is support. I've been given support to be able to attend – be that the opportunity to attend online or get a cab if I am needed in person. It means I can be worry-free. Support for me also takes the form of being valued. I feel valued right now because you want to hear my story and you're building everything with me. It’s not just about me – it's with me.
