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Alcohol and Pregnancy & FASD

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        Community involvement in research

        Telethon Kids Institute is committed to providing opportunities for community members and health consumers to contribute to our research. We partnered with The University of Western Australia’s School of Population and Global Health in 2004 to establish the first consumer and community involvement program in Australia. In 2016 the Consumer and Community Health Research Network was established with funding from Lotterywest.

        Telethon Kids works closely with this Network to make sure the ‘voice’ of the community is heard in all we do.

        The Consumer and Community Health Research Network is aligned with the National Health and Medical Research Council (NHMRC) and Consumers Health Forum of Australia Inc (CHF) joint Statement on Consumer and Community Involvement in Health and Medical Research (the Statement) that has been developed with the aim of supporting consumer and community involvement across all types and levels of health and medical research. Read more

        Community involvement in Alcohol and Pregnancy & FASD research

        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

         

        All our research projects have community members involved in Steering Groups. You can read more about these projects here.

         

        The FASD Research Australia Centre of Research Excellence has a Community Reference Group of 18 people from across Australia. This group completed a project on identifing priorities for research through surveys and a face to face meeting. You can find out more about this project and read the final report here.

         

        If you interested in learning more about our projects or would like to be involved in our research contact The FASD Hub team by email or phone 08 6319 1824.

        Our research