“Not only will you be contributing to important research, but you’ll also find it stimulating and enjoyable.”
Can you introduce yourself?
My name is Fiona Rix. I am a PPI advisor working with the Oxford Brain Health Clinic. I am a retired speech and language therapist. I have always been fascinated by research but never suited the criteria for participation. I have previous experience with PPI through the Jenner Institute and Open Arms at NDORMS.
What inspired you to become involved in health research?
I have always been fascinated by the brain and followed modern research. When my husband was diagnosed with early dementia the Oxford Brain Health Clinic became my natural home. I found the centre by searching for volunteering opportunities.
Could you share a specific research project you’ve worked on and explain how your contributions helped?
Our group has been involved in Jasmine Blane’s research, which looks at bringing remote cognitive assessments into clinical practice.
We helped trial the assessments and provided feedback on how easy they were to use, especially ensuring that mobile phones were easy to use. We also helped assess if instructions and information were clear and free from unnecessary jargon.
We worked with Jasmine on her presentations to the public, highlighting areas where scientific language or too much information could make things confusing.
Researchers often use technical terms out of habit, so our input helps make their work accessible to everyone. At the same time, we made sure to point out her excellent presentation skills and clear speaking voice.
How did you feel when you first joined a research team, and what helped you feel comfortable contributing?
When I first joined the group, the researchers and advisors were warm and welcoming. I immediately felt that this was a partnership.
My initial interview was a positive experience and I felt valued and confident that I could contribute to the group. The respect shown by researchers made a big difference, and everyone’s comments were listened to and discussed. Coffee time was a great way to mix informally. Shona Forster, our previous PPI lead, was especially good at making people feel comfortable (and providing cake!).
In your opinion, how could researchers improve patient involvement to make it more meaningful?
In some of my earlier PPI experiences, it felt public involvement was just a tick-box exercise, and we never really knew whether our feedback and comments made any difference. However, with the Oxford Brain Health Clinic Group, it is very evident that our comments are actively listened to and acted upon.
Meeting face-to-face has made it easier to build better relationships and everyone feels comfortable sharing their views. I’ve noticed that in online meetings, it's easier for one strong speaker to dominate the conversation which can make it harder for others to have their say.
How has your involvement in research influenced your perspective on healthcare?
Being involved in dementia research has enabled me to look at the research first hand rather than through the media. It’s given me insight into the progress that has been made and excitement about the future of dementia research.
What advice would you give someone considering getting involved in research?
If you’re thinking about getting involved in PPI, I’d encourage you to give it a try. Not only will you be contributing to important research, but you’ll also find it stimulating and enjoyable. You’ll meet interesting people and become part of a supportive group. You don't need a scientific background but an interest in making a difference. Don't be put off by thinking it's all too technical; everyone’s perspective is valued. You can also reach out to the department and have an initial chat to see if it’s right for you. Your involvement can help ensure research outcomes are truly relevant and important to patients and the public.
Personally, I’d love to be involved more in the future.
If you could change one aspect about PPI, what would it be and why?
One practical change I'd suggest is ensuring there is adequate parking available for contributors attendings meetings. Making it easier for people to get to in-person sessions helps ensure that PPI activities are accessible to everyone, not just those who live nearby or can use public transport. Addressing these logistical details can make involvement more inclusive and welcoming.