Abstract
BackgroundAustralia’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.MethodsAs 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.ResultsThe 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.ConclusionsThe 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.
Highlights
Australia’s commitment to consumer and community participation in health and medical research has grown over the past decade
A total of 30 statements were submitted in response to questions on consumer and community participation in the fetal alcohol spectrum disorders (FASD) Project
In this paper, we have described the involvement of consumers and community members in the development of a diagnostic instrument for FASD in Australia
Summary
Australia’s commitment to consumer and community participation in health and medical research has grown over the past decade. In 1992, Jenny Macklin, the Director of the National Health Strategy, referred to participation as a democratic right reinforced by government legislation This approach to participation is centred on three factors: 1) public participation at a range of levels; 2) focus on consumers and communities, rather than providers and funder interests; and 3) an open system encompassing information, public accountability, and trans parent and conspicuous decision-making [1]. The majority of health professionals in Western Australia do not routinely ask pregnant women about alcohol use or provide them with information about the consequences of alcohol use in pregnancy. Just asking if you have consumed any alcohol during pregnancy does not provide sufficient information to health professionals. Women expect health professionals to ask and advise them about alcohol during pregnancy. The majority of health professionals do not routinely ask pregnant women about alcohol use or provide them with information about the consequences of alcohol use in pregnancy. This information is recorded on the midwives’ Notification of Birth Form
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