title: Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia.
abstract: BACKGROUND
  Australia's commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers.
  
  
  METHODS
  As part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process.
  
  
  RESULTS
  The on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience.
  
  
  CONCLUSIONS
  The successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members.
authors.affiliation: Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, Western Australia 6872, Australia. hjones@ichr.uwa.edu.au
authors.forename: Heather M
authors.initials: HM
authors.lastname: Jones
authors.forename: Anne
authors.initials: A
authors.lastname: McKenzie
authors.forename: Sue
authors.initials: S
authors.lastname: Miers
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Russell
authors.forename: Rochelle E
authors.initials: RE
authors.lastname: Watkins
authors.forename: Janet M
authors.initials: JM
authors.lastname: Payne
authors.forename: Lorian
authors.initials: L
authors.lastname: Hayes
authors.forename: Maureen
authors.initials: M
authors.lastname: Carter
authors.forename: Heather
authors.initials: H
authors.lastname: D'Antoine
authors.forename: Jane
authors.initials: J
authors.lastname: Latimer
authors.forename: Amanda
authors.initials: A
authors.lastname: Wilkins
authors.forename: Raewyn C
authors.initials: RC
authors.lastname: Mutch
authors.forename: Lucinda
authors.initials: L
authors.lastname: Burns
authors.forename: James P
authors.initials: JP
authors.lastname: Fitzpatrick
authors.forename: Jane
authors.initials: J
authors.lastname: Halliday
authors.forename: Colleen M
authors.initials: CM
authors.lastname: O'Leary
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Peadon
authors.forename: Elizabeth J
authors.initials: EJ
authors.lastname: Elliott
authors.forename: Carol
authors.initials: C
authors.lastname: Bower
mesh_terms: D001315:Australia; D003256:Community Participation; D032921:Consensus; D003299:Cooperative Behavior; D005260:Female; D063647:Fetal Alcohol Spectrum Disorders / Q000175:diagnosis*; D006801:Humans; D011247:Pregnancy; D011296:Prenatal Diagnosis
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