On the 10th of May 2023, Mobilise-D continued with its webinar series, outlining some of the key learnings and work of the consortium. The focus of this webinar was on patient involvement and engagement (PPIE), and the lessons learned from the consortium in terms of setting up PPIE structures to ensure meaningful contributions.
The basis of the workshop was a paper that the members of the PPIE Board and Patient and Public Advisory Group (PPAG) co-wrote together, which is currently under review for publication. The paper outlines what we did to set up PPIE structures and some of the recommendations that we have for other, similar group, who may be planning to embark on similar work in the future.
However, we also wanted to understand what other groups have done to share our similar experiences and challenges collectively. We arranged a panel of people from various groups to discuss this important topic. We were joined by:
- John Linnell (PPAG member, Mobilise-D)
- Gretchen McCreary (COPD Foundation)
- Georgia Mills (EJS Act-PD)
- Solange Corriol Rohou (Aztrazeneca)
The webinar opened with our PPIE lead, Alison Keogh, providing a brief presentation outlining the content of the paper and listing the recommendations that Mobilise-D has for PPIE work. Following this we held a panel discussion chaired by Solange Corriol Rohou, who asked members of the panel about their experiences, some of work that they have done in other research projects, how we can train both researchers and patient advisors to conduct PPIE, and why it is important.
The recording of the webinar can be freely watched on YouTube: https://youtu.be/3FwD9XZynHo
In addition, we have gathered a number of links about PPIE work from various sources including one of our partner patient societies, Cure Parkisnons. We hope this recording and link helps provide insights into PPIE work, its importance and its impact. Please get in touch with us if you have any questions about this.
(Research Resources: Insights and priorities from people with Parkinson’s – Cure Parkinson’s (cureparkinsons.org.uk)) these are based on surveys from people with Parkinson’s on attitudes towards different aspects of clinical trials (Challenges of participating, attitudes towards data collection etc.).
Cure PD presented the preliminary results here: Rallying to the Challenge 2022: watch again – Cure Parkinson’s (cureparkinsons.org.uk)
Prof Camille Carroll’s qualitative paper on the PD STAT trial:Enhancing Trial Delivery in Parkinson’s Disease: Qualitative Insights from PD STAT – PubMed (nih.gov).
EJS- ACT-PD: https://cureparkinsons.org.uk/2021/06/actpd/
https://www.spcr.nihr.ac.uk/PPI/resources-for-researchers/training-for-involvement-and-engagement
