What Will It Take to Improve Early Identification and Intervention Globally?

Background: Early Identification and intervention in community based setting remains a major challenge. While this situation applies globally, the challenge is even greater in communities where issues of survival and physical health are also a priority. In global health research, the 10/90 gap refers to the finding that only 10% of spending on health research and development is directed towards problems impacting 90% of the world's population.

Objectives:   The INSAR Special Interest Group on Early Identification and Intervention (Global SIG) was set up in 2012 to systematically explore facilitators and barriers to early identification and intervention in community-based settings. A knowledge brokering approach was used to elicit expert input that directly responds to needs and priorities of diverse communities. The Global SIG currently groups 177 members from 21 countries.

Methods: The Global SIG organized four workshops over three years focused on early identification and intervention in diverse settings. Prior to each session, participants were invited to complete a survey in which they submit questions on the topic of research priorities (session 1), screening and diagnosis (session 2), intervention (session 3), and specific considerations in low-resource settings (session 4). Using thematic analysis, results from the survey were used to structure the discussions. Topic experts were then identified and invited to address this participatory agenda and to interact with SIG members. Further thematic content analysis on transcripts of each session was conducted after the sessions.

Results: The Global SIG highlighted a number of facilitators and barriers to early identification and intervention that need to be carefully considered when translating evidence into community based settings. The three categories identified relate to (1) current advances and limitation of research in this area, (2) heterogeneity in the characteristics, needs, and capacity in different communities, and (3) translational issues bridging the state of the science with these needs (e.g., cost-effectiveness, scalability, equity, and cultural sensitivity of existing evidence-based tools and models).

The following cross-cutting lessons emerged across sessions: First, there is a need to integrate advances in autism research with broader child development, human rights, and global health approaches. Second, solutions for autism need to focus on enhancing capacity in and leveraging the strengths of existing health and social systems. Finally, efforts to build capacity for identification should go hand in hand with capacity to address the needs of those affected by the condition.  

Conclusions: The Global SIG used a participatory process to bridge expert perspectives with real-world challenges impacting diverse communities. In doing so, the SIG identified several knowledge gaps, addressed misconceptions about research, and facilitated exchange of evidence-based models of care in different communities.