Your lived experiences are valuable to research

There are researchers out there waiting to hear your story.” -  Rachel Hazlewood, 54, from Cardiff. 

Rachel is an autistic person living with Myalgic Encephalomyelitis (ME) who uses her lived experience to help shape research.  

Rachel has been helping with research for more than 15 years before discovering Health and Care Research Wales’ involvement community, which connects members of the public with researchers. 

“Health and Care Research Wales has opened up an easy route to find relevant research projects that match my interest and experiences.” 

Rachel gets regular email bulletins from us which give a brief overview of the opportunities available to help shape research projects. To receive those emails Rachel signed up to receive the Today’s Research bulletin. 

“Selecting research projects to engage with through Health and Care Research Wales gives me the reassurance the projects are of high quality. 

“The Communications, Engagement and Involvement team also provides excellent support. They are always there to answer any questions and clearly explain what is required of you.”  

Rachel has been involved in a number of projects since signing up to be part of our involvement community. One project Rachel helped with was with Swansea University's Audiology Department. The researchers were looking at hearing and brain function in older adults. Her insights helped researchers understand sensory differences in autistic people better. Rachel said: 

"I found the whole process fascinating and learned a lot about my own hearing and cognitive skills.” 

Her involvement and contributions have also had an impact on the progress of some projects’ funding applications. Dr Catherine Purcell, a Reader at Cardiff University, said Rachel's involvement helped her project on the social care needs of neurodivergent adults move to the second stage of the funding application. This proves how public contributors can make a real difference to research. 

"People like Rachel provide insights we might not have considered. Their input made our research application more relevant and inclusive for autistic people.” 

Rachel’s experiences of helping shape research have always been positive and left her feeling good, she said: 

I feel that my input is valued and that my experiences and opinions matter and my contributions are making a positive difference.” 

Dr Purcell is currently looking to engage with parents of neurodivergent children who have conditions that affect their coordination, such as dyspraxia. Since there is some research which suggests trampolining may help improve children's coordination skills, Dr Purcell wants to look at how effective trampolining is when done at home.  

To discuss the project and share your thoughts with Dr Purcell fill in the expression if interest on our website before 12:00 on 23 September.