ALSPAC, the Avon Longitudinal Study of Parents and Children, otherwise known as 'Children of the 90s', is a longitudinal birth cohort study which follows the health of a number of families since 1991/2. The project has led to the development of a massive data set, providing a unique resource for scientists and social scientists alike.
Project participants are involved through clinical assessments, but also through filling in questionnaires, and the project is typified by a long history of communication with the study group. For example, regular newsletters are sent out sharing research findings in an accessible way. There is also a schools liaison officer who talks about the research in schools and, over the years, various parties and socials have been organised.
Some members of the cohort sit on the ethics committee and focus groups are a regular feature of the research. A really exciting development is the Teenage Advisory Panel -- TAP -- which was set up in 2006. There are 30 members, there is a dedicated participation worker supporting them, and TAP meets with the ALSPAC staff on a monthly basis, looking at how to make the project more interesting to the participants (e.g. developing incentive schemes, setting up a Facebook page, Twitter channel etc.) Participants are encouraged to get involved in the research process itself - applying for small grants to support this, something that the project will encourage in the future. They have also been involved in making project materials accessible and are now having an impact on the direction of the research. This is not only hugely beneficial to the project, but it has also given the public a voice in the research.
Read more about the project and
how it moves beyond research in our online collection of
Public Engagement Stories.
