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People affected by stroke are experts in what it is like to experience and live with stroke. We think that it's vital that people with these experiences are involved in stroke research to make sure it's relevant and important to those it aims to benefit.
Being involved in research is different from being a research participant, as you are not the subject of research. Instead, you are a partner in the research process - you’re involved in making decisions that affect research, and you can influence and change what the research becomes.
The National Institute for Health Research (NIHR) defines public involvement in research as: “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
You can find out more about the benefits of involving people in research on the NIHR website. There are many useful resources, guides and examples of involvement in research available on the INVOLVE website.
*Please note, INVOLVE was taken over by NIHR Centre for Engagement and Dissemination in April 2020, therefore, this website is no longer actively updated but has useful publications.
You can read an example of patient involvement within stroke research and improving care on the NIHR website.
Join Stroke Voices in Research
We work with a group of people affected by stroke who are involved in research, called Stroke Voices in Research. These people:
- Help decide what research we fund.
- Have a say in the future direction of our research funding.
- Work with researchers as they develop and carry out their projects.
In 2014/ 2015, members also helped us shape our Priority Programme Awards and more recently supported with the Priority Setting Partnership.
To be a member, you should have personal experience of stroke as a:
- Stroke survivor.
- Family member.
You don’t need any experience in science, medicine or research. There is no minimum time commitment and how much involvement you have is completely up to you. If you would like to join Stroke Voices in Research or if you have any questions, get in touch with us via firstname.lastname@example.org.
If you're unsure whether getting involved in research is right for you, take a look at this personal story produced by INVOLVE.