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Researchers learn about partnering with people with lived experience

A new learning module on InformMe helps stroke researchers understand the benefits of forming partnerships with people with lived experience, and how to go about it.

Lived experience is a unique form of knowledge and expertise that is being increasingly appreciated and harnessed in the research community.

Involving people with lived experience at all stages of research design, conduct and promotion helps to ensure the research is asking the right questions to address real needs, makes communication about the research more appropriate and accessible, ensures study methods are acceptable, and that outcome measures are relevant.

The new module, Working effectively with people with lived experience to design, conduct and promote stroke research, itself stands as an example of this approach. It was produced through a co-design process between people with lived experience and stroke researchers.

The module features working examples of successful research partnerships, along with ‘top tips’ from those who’ve been directly involved.

Adrian O’Malley, a survivor of stroke who works with the Centre of Rehabilitation Innovation, said his involvement in research stemmed from his desire to help make the path easier for future survivors of stroke.

“Lived experience needs to be considered as valuable as scientific knowledge to design better research and get better outcomes,” he said.

Accompanying the module for researchers is another specially for people with lived experience who are interested in working with stroke researchers. This module is available on EnableMe.

Both modules build on the work initiated through the NHRMC Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery to improve how people with lived experience are involved in research.

Co-Head, Stroke Theme at the Florey Institute of Neuroscience and Mental Health Julie Bernhardt said working effectively and respectfully with people with lived experience was important to her.

“I’ve learned so much from them and my research is more relevant, streamlined and impactful as a result,” she said.

Our thanks go to all those who developed these modules in addition to Adrian and Julie: Brenda Booth, Kate Hayward, Liz Lynch, Gillian Mason, Ciara Shiggins and Dana Wong.

Thanks also to all those who have attended workshops hosted by the CRE and conferences where we have developed and refined the material that is now in the modules.

You can find the new learning module for researchers at

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