WSC 2026 | Guidance for involving lived experience experts in stroke research
Lisa Murphy, MBBS, MRCP, Stroke Foundation, Melbourne, Australia, shares guidance for involving lived experience experts in stroke research. Dr Murphy emphasizes that lived experience experts should be valued for their skills and contributions beyond their personal experience, and that researchers must make an effort to get to know them and ensure they are the right fit for the project. This interview took place at the 18th World Stroke Congress (WSC) in Seoul, Korea.
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Transcript
Being research-ready for a researcher is really understanding what it means to not just have tokenistic lived experience on your research project and for a lived experience expert it’s understanding that you’re there for a particular reason and your skills so you’re not just there for your lived experience, it might be broader than that. And also knowing how to contribute and be involved...
Being research-ready for a researcher is really understanding what it means to not just have tokenistic lived experience on your research project and for a lived experience expert it’s understanding that you’re there for a particular reason and your skills so you’re not just there for your lived experience, it might be broader than that. And also knowing how to contribute and be involved. I think the key challenge is not having a lived experience person there just because it’s a tick box. You’ve really got to get to know that person. You have to make sure that they’re the right person for your research project. So you wouldn’t, for example, have a researcher on your team that has no interest in the topic that you’re researching. And likewise, for the lived experience expert. You need to spend extra time getting to know them, having buddies alongside them, so they’ve always got a point of contact, making sure you don’t need acronyms, so many things. So I recommend if you are, as a researcher, interested in using lived experience experts on your research, there are many, many resources to help you do that.
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