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Integrating Research, Practice and Policy in ASD

Thursday, 2 May 2013: 14:00-18:00
Banquet Hall (Kursaal Centre)
L. White1, S. J. Carrington2, B. Winn3, C. Ramsden3, H. Morgan4 and S. R. Leekam5, (1)Wales Autism Research Centre, Cardiff University, Cardiff, Wales, (2)Wales Autism Research Centre, Cardiff, United Kingdom, (3)Cardiff University, Cardiff, Wales, (4)Autism Cymru, Cardiff, Wales, (5)Park Place, Cardiff University, Cardiff, United Kingdom
Background: Research in ASD has helped to advance our knowledge about evidence-based methods for identification, diagnosis and intervention in ASD. However, much of the new knowledge emerging from this research is not reaching the people who need it. Many users of autism services, practitioners and policy-makers are not aware of research evidence and how to evaluate it. Likewise, some key issues affecting individuals with autism that are being articulated by government agencies, third-sector organisations and service users are not impacting on research.

Objectives: 1) to facilitate sharing of expert knowledge across areas of research, policy and practice 2) To increase awareness and understanding of evidence-based scientific research in the non-academic community and 3) to promote engagement with users of future research through consultation and participation.

Methods:  (1) A web-based electronic forum was developed to promote the sharing of expertise between practitioners and researchers for specific topics (e.g. diagnosis, sensory symptoms). (2) Two ‘research aware’ resources were designed; a ‘research aware leaflet’ for parents and a ‘research toolkit’ for practitioners, each focused on enhancing research knowledge about intervention. (3) Familiarisation resources were designed for potential users of researchers; a booklet and DVD about neuroimaging research. 

Results: (1) The web-based electronic forum for practitioners and researchers generated debate and discussion between more than 100 researchers and practitioners, including discussion in advance of two international meetings. (2) Consultation with potential users of the ‘research aware’ resources identified aspects of research methodology that are not understood by either parents or practitioners. (3) Engagement with users of research through the familiarisation resources resulted in half of them expressing an interest in participating in future neuroimaging research.

Conclusions:  Results of the electronic forum activity helped to identify patterns of user activity that will inform the development of a larger scale online networking area. Further work is needed to increase understanding of research evidence and willingness to incorporate it into decision making in policy and practice. Increasing engagement and participation in research will be accompanied by improved dialogue and two-way communication between researchers and users of ASD research.

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