Community engagement and knowledge translation: Progress and challenge in autism research

Abstract

The last decade has seen significant growth in scientific understanding and public awareness of autism. There is still a long road ahead before this awareness can be matched with parallel improvements in evidence-based practice. The process of translating evidence into community care has been hampered by the seeming disconnect between the mainstream scientific research agenda and the immediate priorities of many communities. The need for community engagement in the process of translating knowledge into impact has been recognized. However, there remains little consensus or empirical data regarding the process of such engagement and how to measure its impact. We shed light on a number of engagement models and tools, previously advocated in health research, as they apply to autism research. Furthermore, we illustrate the utility of such tools in supporting identification of knowledge gaps and priorities, using two community-based case studies. The case studies illustrate that information generated from research is indeed relevant and critical for knowledge users in the community. Simple and systematic methods can support the translation and uptake of knowledge in diverse communities, therefore enhancing engagement with research and bridging research findings with immediate community needs.

Autism: A Global Perspective

“…In contrast, there is no doubt that the challenges introduced by the condition in diverse community-based settings are increasingly understood, and innovative approaches are being developed to meet these challenges. Partnerships bringing together different stakeholders including researchers, practitioners, and policy makers are critical in moving forward [54]. In recent years, WHO has expanded their efforts in the area of autism through developing partnerships at the global level with key international stakeholders [42].…”

Nurses Taking the Lead: A Community Engagement and Knowledge Exchange Forum on Substance Abuse and Addiction in Prince Albert, Saskatchewan

“…In this work, the research team adopted Bourne and Walker's (2006) definition of a stakeholder as an individual or group(s) who has expert knowledge, is essential to the implementation of the study findings and who has a vested interest in the outcome of the research findings or a project. Based on this definition, the nurse researchers in the present work envisioned substantive engagement at the event (and afterwards) of these stakeholders that would entail dialogue that encompasses interested parties coming together to identify issues of mutual interest (Elsabbagh et al 2014;Stirling 2008).…”

Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research

“…This type of engagement exercise was deemed necessary to advance research, practice, and policy in this area because involving diverse stakeholders is likely to result in a more representative priority list than engaging researchers alone. Similar priority‐setting exercises have successfully informed national level strategy and policy related to ASD services [Elsabbagh et al, ]. The purpose of this paper is to document the key themes that emerged from the SIG.…”