Dr Rachael Lawson is Parkinson’s UK Senior Research Fellow at Newcastle University and has more than ten years’ experience of facilitating Patient and Public Involvement and Engagement (PPIE) in research.

She is part of the NIHR Newcastle BRC’s dementia, mental health and neurodegeneration research theme, leading on PPIE in this area with Dr Alison Killen.

Dr Lawson was instrumental in establishing the North East and Cumbria Parkinson's Research Interest Group (NEC-RIG), providing a vital focus for public involvement in Parkinson’s research.

Here she explains more about her research – and her passion for making research accessible to all:

"I work to understand the measures and mechanisms that underpin the neuropsychiatric symptoms and delirium in Parkinson’s disease and Lewy body dementias.

The aim of my research is to improve the quality of life for patients with Parkinson’s and their carers. Parkinson’s is a complex disorder and it’s definitely important to improve the quality of life for patients and their carers. I just want to help and I want to contribute to that improvement.

There’s so much I like about my job - I was originally interested in clinical psychology and started as a research assistant on a study with Professor David Burn – I loved it and then stayed in research.

The Parkinson’s community is really engaged and it feels very altruistic. They take part in research with the knowledge that it might not benefit them immediately but it will eventually help others."

Fantastic network in the BRC

The BRC is a fantastic network of leaders – and we have an excellent infrastructure that underpins research here. There are world-class facilities and I think we sometimes forget how fantastic our facilities are, such as the state-of-the-art GAIT lab at the Clinical Ageing Research Unit (CARU).

Importance of PPIE

I believe that more weight needs to be given to PPIE. It’s fundamental to excellent research that is both meaningful and impactful, regardless of which group or health condition it benefits.

We need a shift to PPIE being embedded in research right from the start of a project or idea.

One of the things I realised was there was a lack of PPIE in Parkinson’s Research groups in the region – so in 2021 (during Covid), with my co-lead Dr Rosie Morris, we founded the North East and Cumbria Parkinson's Research Interest Group (NEC-RIG) group to promote research engagement for people living with Parkinson’s. Newcastle is one of the main centres nationally for Parkinson’s research and there is a concentration of excellent work happening in the North East. We’d like to use the NEC-RIG as a test case and help others to replicate it by developing resources they can use.

Event success

Our Research Engagement Day in Newcastle sold out quickly with more than 70 people affected by Parkinson’s attending. It showed there is a real appetite for this. Professor David Burn gave the keynote speech and a patient read a poem about his experience of taking part in research, there was not a dry eye in the house!

Study – DELIRIUM-PD

Broadly, the study aims to understand delirium in Parkinson’s – there’s a real unmet need with research in this area, in that there isn’t much research currently. It’s worrying because Parkinson’s is a risk factor for delirium that can be very serious when people are unwell. It can lead to really poor outcomes, including dementia or mortality.

We’re researching what it looks like when someone has Parkinson’s delirium – and how to better identify it.

By researching and then raising awareness of the condition we hope that we can help people understand the symptoms – and lead to more accurate diagnosis and management, and better long-term care for patients and their carers."

Find out more about the Parkinson’s North East and Cumbria Research Interest Group (NEC-RIG)

Read more about the DELIRIUM-PD study