Knowledge Translation Strategies for Engaging Families in Biomarker Discovery

Background:  Miscommunication regarding the promise of biomarker discovery for supporting earlier identification and diagnosis of autism has led to controversies and unnecessary hype surrounding the true value of this research (Walsh et al., 2011). Our aim was to develop strategies to clarify the state of the science in biomarker research for families affected by autism and to obtain feedback regarding the realistic impact such biomarkers can have on early diagnosis and intervention in ASD. Specifically, we used knowledge translation (KT) strategies to explore current beliefs and awareness among families about early identification and intervention in ASD and its relation to the biomarkers discovery agenda. KT is defined as the exchange, synthesis and ethically-sound application of knowledge within complex systems of interactions among researchers and knowledge users (Canadian Institutes for Health Research).

Objectives:  1) to examine families’ knowledge (including misconceptions), attitudes and expectations towards ASD biomarker research in early identification and intervention, 2) to resolve misconceptions surrounding the current state of science, and 3) to gain feedback from families as to how such biomarker could improve their lived experience. 

Methods:  Participants in this project were one biological parent from each of the families involved in large-scale national studies. An extensive literature review was conducted to guide the design of an interactive survey. Survey questions elicited information in the following domains – 1) socio-demographics; 2) knowledge and attitudes about biomarker research; 3) expectations of the role of biomarkers; 4) preference and utility of knowledge of biomarkers in early identification and intervention of ASD. After survey completion, participants received feedback regarding their answers to questions related to their knowledge about biomarkers.  

Results:  Initial survey results provide insight into families’ knowledge, attitudes and expectations about ASD biomarker research and its utility in early identification and intervention. Data obtained from the survey will be used to develop focus groups and interactive educational workshops to address misconceptions and to support families’ understanding of the state of the science in biomarker research.

Conclusions:  This project is a part of our ongoing research employing systematic research methodology in KT activities and to support the engagement of knowledge users in research. An Integrated Knowledge Translation (iKT) Toolbox is under development to support large-scale autism research studies to foster dialogue between researchers and key stakeholders including affected families.