PwP perspectives: Why research? Presenting the information? How best to engage PwP with research, including PPI?

For a number of years we have received feedback at the Parkinson’s Academy about including sessions about research. Taking these responses and working with The Cure Parkinson’s Trust(CPT) and NIHR leads Dr Camille Carroll, Professor Oliver Bandmann and the Academy’s Dr Peter Fletcher, we designed the Research Engagement meeting for professionals who are becoming or aspire to become involved with Parkinson’s research on many different levels. Each week we are posting a blog to look at the meeting’s speaker sessions in more detail.

The afternoon focused on involving people in research, starting with two talks reflecting the perspectives of two PwP (people with Parkinson’s): Why research? Presenting information and How best to engage PwP with research. Vicki Dillon’s powerful speech started by explaining her involvement in research, and in particular in a clinical trial. She called for more support during and after trials and the need to mentor/buddy patients and their families through recruitment. She recommended counselling be made available pre, during and after trials, as participants need closure and they need to feel valued. She encouraged participants to ask for help – being a super patient isn’t always the best way. She queried whether patients should be paid, or at least fully reimbursed for trials, as expenses offered do not always cover the costs.

Vicki Dillon, patient advocate and retired nurse

Dr Kevin McFarthing has developed a tool to enable PwPs to find the trials that might be most relevant to them. Called the Hope List, Kevin has created a database of Parkinson’s trials segmented by stage in the R&D process; and whether they are for symptom relief or modifying disease progression.

He provided attendees with an overview of the clinical trial landscape in Parkinson’s, clearly demonstrating the interest in Parkinson’s from commercial organisations with trials aimed to address specific targets (alpha-synuclein, GBA, LRRK2, or mitochondrial dysfunction). He highlighted the significant increase in energy and focus, and in turn the opportunities for clinicians and patients to get involved.

He identified that there are currently 88 trials to relieve Parkinson’s symptoms, and 175 trials to either retard disease progress or replace cells. However, there are only three phase III trials of disease modifying treatments.

Listen to these presentations: