Author: Claire Nolan, Research Involvement Manager, Parkinson’s UK

What happens when you ask 39,000 members what they think of you? In the case of Parkinson’s UK we did this around 7 years ago and it transformed our organisation – making us more patient inclusive and patient focussed in everything we do. Now we have people affected by Parkinson’s working and giving their input across every part of our organisation making sure we live our ethos that everything we do will be driven by people affected by Parkinson’s.

Patients are our biggest supporters – and our biggest challengers. They challenged us to do better and we responded by transforming the way we work including our strategy, our recruitment practices and our research programme.

An essential thread underpinning the transformation was to develop and facilitate tangible and effective partnerships with patients across Parkinson’s UK. This was especially true for research where we developed our Research Support Network, an online network for people affected by Parkinson’s to engage with research, and our Patient and Public Involvement program which includes an ‘Induction to Research’ session so that people affected by Parkinson’s can learn about the research process and have the skills and knowledge base to meaningfully engage in and work with researchers to shape the direction of vital Parkinson’s research.

In the absence of a cure, patients tell us they want an intervention that will stop disease progression in its tracks which makes patient input in Parkinson’s so relevant. Medicines are made to make patients’ lives better – to do this we need to find out from patients what ‘better’ looks like. People with Parkinson’s are experts and can help inform the relevance and quality of research. We see helping patients to get involved in research and connecting them with those doing the research as a priority for Parkinson’s UK.

Connecting should not be limited just to patients and researchers but should encompass all health stakeholder groups including the pharma industry. This is why we were committed to being a member of PFMD – joining a coalition which is an inclusive and equal collaboration of health stakeholders. For Parkinson’s UK, joining a global effort to change and improve the way patients are involved in medicines development was a rational and essential step. Through PFMD we have a wider reach and impact than any individual member organisation could have alone.

Importantly, PFMD work and outputs are not just for its members. PFMD encourages and invites input from all those committed to meaningful patient engagement. Any outputs, tools and resources are and will continue to be widely and freely shared with the whole patient engagement community so we can collectively drive improvements in patient engagement. We are always looking ahead to see where we can achieve the most value for people affected by Parkinson’s – being part of PFMD makes our efforts go further.