Dr Mary O’Leary shares the work behind her recent application to Parkinson’s UK, exploring how nutritional interventions can support aspects of Parkinson’s symptom management. Patient and Public Involvement and Engagement (PPIE) Funding helped ensure lived experience could be brought into this work, inviting collaboration throughout the research process.
Amount of award: £350
Submitted as a pre-proposal to Parkinson’s UK’s Non-Drug Approaches funding scheme, our project centres around a nutritional intervention, which aims to empower people with Parkinson’s to self-manage aspects of their condition, through monitoring the effects of their dietary intake. For most of the study team, as this has been our first time working directly with people with Parkinson’s, it was particularly important to include patient and public involvement (PPIE) to ensure a meaningful and feasible approach. We recognised that listening to the experiences and insights of those living with Parkinson’s was crucial to the design and delivery of an effective, relevant intervention.
Thanks to the PPIE funding and support from Parkinson’s UK’s Patient and Public Involvement team, we conducted structured focus groups and individual interviews with people living with Parkinson’s to inform the pre-proposal. These engagements helped us understand their perspectives and tailor our plans accordingly. We were able to remunerate participants for their time, which we believe was key to encouraging open, honest engagement. We were also delighted to include a person with Parkinson’s as a lay co-applicant on our proposal—a step made possible through PPIE funding.
The biggest challenge we faced was the limited time available to conduct our PPIE activities before the pre-proposal deadline. Despite this, we maximised the time we had and gathered rich, valuable input. In particular, the structured, facilitated discussions worked particularly well, and provided a safe space for participants to share in-depth thoughts.
The project also gave us a valuable opportunity to ground our scientific ideas in real-world experience. Often, what seems scientifically optimal may not be practical or acceptable in real life. The input we received allowed us to refine our proposal into something both scientifically robust and realistically implementable. This provided us with a better-designed intervention, while for the people with Parkinson’s we engaged with, it meant having their voices genuinely shape something that could impact their lives.
If, following feedback on our pre-proposal, we are invited to submit a full application, we plan to extend and deepen our PPIE work. Our co-applicant will continue to support the development of our proposal, and we hope to involve more people living with Parkinson’s to broaden the insights we gather. Even if our application is not successful at this stage, we are committed to pursuing this programme of work and building on the strong foundation of engagement we’ve established.