Working to improve opportunities to take part in research
I’ve been fortunate to have been working in the world of Parkinson’s research for seven years. My first experience of Parkinson’s was when I was 15 and working as a domestic member of staff in a nursing home. That was 17 years ago now and how things have changed, not just in our understanding of people getting Parkinson’s but also as a society, moving forward and innovating.

At university my first degree was in Psychology and Performing Arts. To be honest, I was somewhat more enamoured with the Performing Arts but through my degree I began to appreciate the intrinsic overlap in the two subjects, specifically where research was involved. Wanting to be able to understand people’s physical and mental motivations pushed my academic career forward.
After a short interlude of running away to grow up I then started my Masters degree in Cognitive Neuropsychology. I soon discovered the area in which I had most interest was neurodegeneration. After completing my degree I realised how little I knew and wanted time to learn more.
I decided the best way to do this was to enter the practical research world. Little did I realise at the time how different this was from the academic research world. Delivering cutting edge research in the NHS was one of the most exciting and nerve wracking job starts I’ve ever had, and was a very steep learning curve. My interest in people gave me a bit of a leg up, but the truth is research happens in an entirely different language!

From the moment I met my first research participants I knew Parkinson’s research was going to be my future. Not only were all the people I met incredibly keen to find out more about Parkinson’s, but they also had the desire to try and help others in the future. I was very fortunate to work with a brilliant consultant who taught me the complexities of Parkinson’s as a condition, but also how varied his patients were. Each person’s journey with Parkinson’s is unique, and sharing research opportunities to support these journeys was key.
After five years I was ready for a new challenge and luckily found my current role of Senior Research Participation Officer at Parkinson’s UK. This role was created to bring a focus to, and drive forward, how we can help people find opportunities to take part in research.

So two years in, we have created the ‘An introduction to taking part in research’ leaflet, we’ve helped more people than ever find out about studies they can take part in and we’re being approached by more researchers year on year about sharing their research. And we have more exciting projects in the pipeline.
Many of you have been part of this success. And for those of you who have yet to do so, please join our Research Support Network so we can share with you all the exciting moves we’re making to improve opportunities to take part in Parkinson’s research.

Amelia Hursey is a member of the Research Team at Parkinson’s UK. She writes blogs about taking part in research.


