Consumer and community involvement is an integral part of alcohol and pregnancy & FASD projects at the Telethon Kids Institute.
This collaboration has been evaluated following several projects with comments such as:
"as consumers we were part of a very constructive process of turning research into useful resources"
"... bring a different perspective to health professionals and researchers"
"... a reminder of the world outside research"
"...they bring balance"
Two papers on consumer and community involvement in alcohol and pregnancy and FASD projects have been published.
Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation. Payne JM, D'Antoine HA, France KE, McKenzie AE, Henley N, Bartu AE, Elliott EJ, Bower C.Health Res Policy Syst. 2011 May 14;9(1):18.
Involving consumers and the community in the development of a diagnostic instrument for Fetal Alcohol Spectrum Disorders in Australia.Jones HM, McKenzie A, Miers S, Russell E, Watkins RE, Payne JM, Hayes L, Carter M, D'Antoine HA, Latimer J, Wilkins A, Mutch R, Burns L, Fitzpatrick J, Halliday J, O'Leary CM, Peadon E, Elliott EJ, Bower C. BMC Health Research Policy and Systems 2013, 11:26
We have community representatives on project Steering Groups and the FASD Research Australia has a Community Reference Group of 18 people from across Australia.
Read more our projects
If you interested in learning more about our projects or would like to be involved in our research contact Heather Jones by email or phone 08 9489 7724