The perspective of an early career researcher: setting priorities on oral health
Jessie Tebbutt is an early career researcher at the University of Sheffield. Based in the School of Clinical Dentistry, Jessie’s research focuses on the oral health of people with Parkinson’s. She’s particularly interested in how accessible oral care is for different groups. To understand the experience of people with Parkinson’s and to make sure her research was relevant to them, Jessie worked with members of the Parkinson’s community. We caught up with Jessie to hear about her experience of carrying out Patient and Public Involvement for her research project.
Key words:
Patient and Public Involvement (PPI) is when researchers and people affected by conditions work in partnership to plan, design, implement, manage, evaluate and share research.
PPI Contributors work alongside researchers to design and shape vital Parkinson’s research.
Why did you carry out Patient and Public Involvement (PPI)?
I am currently developing a project looking at improving mouth and dental health for people with Parkinson’s. When I reviewed the published research literature, I noticed that there was minimal representation of people living with Parkinson’s. For me, the purpose of involving people at an early stage in the research was clear — to make sure my project was actually of interest and relevance to the Parkinson’s community.
What were your first steps?
I reached out to the Parkinson’s UK Research Involvement team, who were incredibly helpful and supportive. We planned how I could best carry out my initial engagement with members of the community. This helped me identify lots of things for me to consider such as timing, offering flexibility, and the importance of communicating in plain English.
The Parkinson’s UK team then advertised the opportunity to PPI Contributors and some local groups. I organised an online group discussion with those who had expressed their interest in taking part, as well as several individual calls for those who couldn’t join the group discussion, or didn’t feel able to. It was important to make sure the discussions were accessible, so we factored in communication challenges by running longer sessions of 60 to 90 minutes, which sounds like a long time but it did allow for comfort breaks! This ensured that everybody felt able to offer their input.
Who was involved?
I was surprised by the diversity of people who reached out to me, from those only recently diagnosed, to those who had lived with Parkinson’s for many years. I met people’s family members, or care partners, who were there to support their loved ones, and those who identified as having more formal caring roles.
There was a real mix of research experience, with some people who had already been involved in research, and others who were new and wanted to see what it was all about (I hope I didn’t put them off!). This diversity brought a broad range of thoughts and a real richness to the conversations, which have hugely benefited me and the project.
Did you face any challenges?
Finding a date and time that suited everyone was the main challenge — people are very busy, and I wanted to involve as many people as I could.
Facilitating group discussions is a real skill. From the outset it’s important to highlight that these are safe spaces, where everyone is respected. You need to ensure that everyone feels part of the conversation, is able to share openly and honestly, and knows their contribution is valued. I had to recognise that my role was not to dictate the discussion, but to encourage conversation. I was there to listen. Achieving all of this can be hard, especially in a virtual setting.
One of the main things I worry about is inclusivity. So far, my engagement has relied on people linked to the Parkinson’s UK network, which may limit my audience. There is also the question of digital exclusion: by relying on emails and virtual meetings, who have I left out? There is clearly more work to be done on how to identify and reach new groups and individuals and offer more options to get involved.
How did you find it?
When people started talking, I found it encouraging to hear them discussing their experiences. It gave me a real insight into their issues and concerns. When people shared their poor experiences and the impacts they had had on their quality of life, it was hard to hear. But it has motivated me even more to continue with this work.
There is a lot of responsibility within this process for the researcher. You need to really listen to what people tell you, make sure that you take their perspectives on board, and represent them appropriately in your work. It’s challenging because there are such a broad range of perspectives and opinions, and drawing them together can be tough.
It’s also important to be clear about what your research can’t do or fix. This is a difficult conversation to have when you want people to be interested in your work, and to potentially support it in the future.
What impact has this had on your project?
It has provided my work with a strong foundation. It’s helped me identify some of the priorities I should focus on, including specific symptom management, enhancing quality of life, maintaining dignity, and receiving professional support from across medical and dental teams. I’m really grateful to the people who have given up their valuable time to share their experiences so openly with me.
It has also given me some insight into the challenges that my project may encounter, which I will need to plan for. It gave me ideas and suggestions of other people who should also be involved.
The next stage of my project involves interviewing people about their experiences of performing mouth care. After sharing the information sheets and questions with the PPI Contributors, I ended up re-phrasing questions and making my information sheets much clearer. This feedback was incredibly helpful. It is the sort of thing that’s good to know before you start, so that you can spend the interview building good connections and making efficient use of people’s valuable time.
What’s next?
I am currently planning my next project, a PhD, and I’d like to form a project management group and PPI Panel including people with Parkinson’s and their care partners to consult regularly throughout the process, to guide its development and ensure it stays relevant. There are other ways people can help too, like taking part in the actual design and production stages, helping with recruitment, or raising awareness by identifying events or sharing information.
Is there any advice you’d give to people considering getting involved?
I think people are put off by the idea of getting involved in ‘research’ because they worry about not having the ‘expertise’ or knowing the ‘right words’ to use. But being yourself is all that is required. Who knows more about your life and what matters to you than you do? Researchers are also there to support and guide you in learning new skills, and maybe you’ll find out things about yourself you never knew before!
I’ve found it a very rewarding process to meet people, and to share their stories; it gives meaning to my work. I hope that hearing about these experiences will encourage people to get involved.
If you’d like to hear more about mouth and dental issues and Parkinson’s, you can read about looking after your oral health when you have Parkinson’s on our website.
If you’re a researcher and would like Parkinson’s UK to support research involvement, please get in touch at researchinvolvement@parkinsons.org.uk.
If you are a member of the Parkinson’s community, and would like to help shape research, please get in touch at researchinvolvement@parkinsons.org.uk, or visit the PPI Contributors page on our website.
