Autism CRC has long been committed to inclusive research practices and co-production for and with the autistic and broader autism communities. The development of our Inclusive Research Practice Guides and the establishment of our Sylvia Rodger Academy are two significant initiatives previously undertaken by Autism CRC.
Evidence demonstrates that engaging individuals on the spectrum and their families and carers as peers in research – from the definition of need to the conduct of research and its application – promotes quality, translatable research relevant to community need.
To highlight those organisations who are committed to sustainable research co-production, we established our Autism CRC Research Co-production Partner initiative in 2018.
About research co-production
Research co-production, also termed ‘peer research’, involves researchers and end-users working together as peers to ensure that the purpose of the research, the research methodology and the application of research outputs are relevant to, and appropriate for the end users – in this case, those on the autism spectrum and their communities. Traditionally, people on the spectrum have been ‘subjects’ of research studies and excluded from direct research involvement and autism-policy development1. Research co-production, however, recognises and equally values the skills of researchers and the expertise that people on the autism spectrum and their families/carers have gained through their lived experience, and engages them at every stage of the research process – from identification of research questions, data collection and analysis, through to dissemination and knowledge translation2.
Benefits of co-production include increased research quality3,4,5,6 through better designed studies, more trustworthy conclusions and access to larger samples as a result of more accessible data collection instruments7,8. Research co-production has the potential to generate more relevant and appropriate research that is responsive to the needs of people on the spectrum2,3,6,9. Further, co-production supports research implementation and translation as research findings and interventions are more likely to be accessible, useful and sustainable, and more widely disseminated2,9. In addition, end-user involvement in research co-production can increase empowerment, personal development and self-esteem for individuals and autistic communities3,4,9.
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- Raymaker, D., & Nicolaidis, C. (2014). Participatory research with autistic communities: shifting the system. In J. Davidson & M. Orsini (Eds), Worlds of Autism: Across the spectrum of Neurological Difference (pp.169-188). Minnesota: University of Minnesota Press.
- Cargo, M., & Mercer, S.L. (2008). The value and challenges of participatory research: strengthening its practice. Annual Review of Public Health, 29(1), 325-350.
- Bailey, S., Boddy, K., Briscoe, S., & Morris, C. (2014). Involving disabled children and young people as partners in research: a systematic review. Child: Care, Health and Development, 41(4), 505–514.
- Kirby, P. (2004). A Guide to Actively Involving Young People in Research: For Researchers, Research Commissioners, and Managers. Hampshire, UK: INVOLVE.
- Puyalto, C., Pallisera, M., Fullana, J., Vila, M. (2015). Doing research together: a study on the views of advisors with intellectual disabilities and non-disabled researchers collaborating in research. Journal of Applied Research in Intellectual Disabilities. 29 (2), 146-159.
- Stantiszewska, S., Brett, J., Mockford, C., & Barber, R., (2011). The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care, 27(4), 391-399.
- Nicolaidis, C., Raymaker, D., McDonals, L., Dern, S., Boisclair, W.C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistics adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28(6), 761–769.
- McDonald, K.E., & Raymaker, D.M. (2013). Paradigm shifts in disability and health: toward more ethical public health research. American Journal of Public Health, 103 (12), 2165-2173.
- Pellicano, E., Dinsmore, A., & Charman, T. (2014). Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study. PLoS One, 9(10), e109946.doi: 10.1371/journal.pone.0109946.