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Organization: Deafness Forum Australia
Title: Launch: ‘No Research About Us, Without Us’
Alternate tite:
Launch: ‘No research about us, without us’
Description:
‘No research about us, without us’ is Deafness Forum Australia’s statement on citizen and community involvement in health, disability and medical research.
It articulates the significance of citizen involvement, details its benefits to the research process, explores various levels and types of involvement, and addresses implementation challenges.
Launched to mark World Hearing Day in 2025, its purpose is to enhance our understanding and application of ethical, inclusive research practices, ensuring that our approach remains relevant and effective in engaging citizens in the research process.
It is vital that the diverse experiences and needs of community groups are accurately represented through direct citizen engagement across the research process.
‘No research about us, without us’ is gifted to organisations and researchers worldwide to promote citizen participation in research. We ask only that Deafness Forum Australia [www.deafnessforum.org.au] be attributed as the author.
Read ‘No research about us, without us’ at https://www.deafnessforum.org.au/research/
Primary site: WPR – Australia / Heard Island And Mcdonald Islands
Secondary sites: WPR – New Zeland / Tokelau
Impactful Story:
Feedback received:
“It is a really helpful resource to guide our work with consumers.” Prof Bamini Gopinath, Cochlear Chair in Hearing and Health and Professor, Macquarie University Australia.
“This is well received, with thanks. We are learning new things… Keep up the good work.” Nalubwama Mastulah, Uganda Federation of the Hard of Hearing.
“This paper is much appreciated.” Phillip Nakad, Operations Manager, National Acoustic Laboratories, Macquarie University Australia.
General Photos
Deafness Forum’s CEO Steve Williamson at research roundtable
Deafness Florum’s logo
Types of Engagement:
Screening: No
Traditional media: Yes
Social media: Yes
Special needs populations: Culturally and Linguistically Diverse populations, peope with intellectual disabilities, people with hearing challenges.
Participation of policy makers: No
Participation of influencers: No