Shaping research on visual training- Researchers’ experience of PPI
Patient and Public Involvement (PPI) has an important role in ensuring that research studies are practical and feasible for future participants. Julia Das and Rosie Morris, researchers at Northumbria University, share their experience of holding a focus group to discuss the design of their research study with people affected by Parkinson’s.
About Julia and Rosie’s research
Some people with Parkinson’s experience visual disturbances that can have an impact on walking and balance.
Stroboscopic visual training (SVT) is designed to train the connections between an individual’s eyes, brain, and body. Individuals wear specialised glasses with lenses that flicker between clear and opaque. Research in athletes has shown that SVT can improve skills such as reaction times and hand-eye coordination.
Julia and Rosie are investigating if this kind of visual training might be helpful for vision and balance in Parkinson’s.
About the PPI activity
As part of her PhD, Julia wanted to meet with people from the Parkinson’s community to discuss the plans for the research project and make sure the study protocol was practical for future participants. She was also looking for help to ensure that the study participant information sheets were clear and understandable for people taking part.
6 people affected by Parkinson’s, including people with the condition, partners and family members, were invited to take part in an online focus group.
Julia is a PhD student and Rosie is her PhD supervisor. Here they share their experience including top tips for holding an online focus group with PPI contributors and the impact it has had.
How did you find the focus group- what went well and what were the challenges?
Julia: Although I had hosted focus groups in-person before, it was my first time holding a focus group online. I found it a really positive experience. The focus group was held in 2020 during the Covid-19 pandemic when a lot of people were focusing on their health and well-being. We were really surprised with how many people were willing to be involved.
Holding the meeting online meant that we were able to invite people from across the country, not just locally. And, as there were no travel expenses it also made it a cost-effective and efficient way to involve people. Being online also made it easy to record the meeting to refer back to.
The number of people worked well — I think any more than six people would have been too many.
There were some challenges to holding the meeting virtually. Some people with Parkinson’s find it difficult to project their voices and sometimes it was hard to hear people. Some people were also less confident using the online technology.
Do you have any advice for researchers planning online focus groups?
Julia: I’d definitely recommend holding an online focus group, the positives of holding the meeting virtually 100 percent outweighed the negatives.
I would recommend having a step-by-step guide on how to use the online meeting platform to share before the meeting, and to offer support if people need it. It definitely helps to have at least two people to host the meeting — one person to lead the discussion and another to take notes and offer technical support to participants and respond to “chat” questions if needed.
If someone is speaking quietly or has poor internet connection and you don’t hear something, encourage participants to take their time and repeat what they said. Some of the group used a special microphone which helped them to project their voice better — that worked really well.
What impact has the involvement had on your research and you?
Rosie: Everyone was really honest, it really helped to identify where the problems with our study were.
Julia: The discussions helped us to understand if the planned study was manageable for people with Parkinson’s. For example, we changed the study design from two six week periods of SVT to two four week periods of SVT based on the group’s suggestion. We also needed to clarify some of our eligibility criteria so people were clear who could take part in the research.
The group also highlighted the importance of the language we use -for example some people prefer ‘Parkinson’s’ rather than ‘Parkinson’s disease’.
After the feedback from the focus group I felt a lot more confident when submitting the study to the ethics panel. The study was approved and we received really positive feedback about the quality of the participant information sheets and lay summary — working with PPI contributors definitely helped us produce high quality documents.
The focus group also made me feel more confident as a researcher and it added real excitement and buzz to the research we are doing. I really enjoyed talking with the group about what we do and it motivated me to want to help.
Do you have any other reflections you’d like to share?
Julia: I understood the concept of PPI before, but the focus group really reinforced how important it is to involve people affected by the condition in our work and the impact they can have. It was a big learning experience for me.
Rosie: In the future it would be better to involve people earlier in the process so they can have a bigger input into the methodology. It’s really important to be receptive to the changes that people suggest and that we can make.
Julia: People in the group appreciated receiving feedback following their input and many have expressed interest in being involved again. We plan to work with the Parkinson’s community in a longer term partnership working on data analysis and, when the study is complete, communication and sharing of the results.
With thanks to Julia and Rosie and to Michelle Tong and Involvement Steering Group members Eric Deeson, Ellen Poliakoff and Gillian Granville for their guidance and input in writing this blog.
