JMIR Publications

ABSTRACT

Background:

The rising prevalence of autism highlights the challenges faced by healthcare professionals, educators, and guardians in managing autism care. ECHO Autism Communities was established to train professionals in best practice autism care and diagnosis through regular virtual case-based learning sessions. The programmatic offerings and global expansion of the ECHO Autism model led to a need for standardized outcome measures to evaluate effectiveness.

Objective:

In this study, a review of existing measures was conducted, and a minimum dataset (MDS) was created.

Methods:

The study team collected 42 surveys from existing programs, organized all survey metrics, and refined them into a standardized set of metrics. The MDS was designed to measure priority information, set consistent scales and anchors, use inclusive language, standardize response choices, and determine units of analysis to transform data into actionable information. An early version of the MDS was translated into Spanish and piloted in programs in the United States, Argentina, and Chile.

Results:

Pilot data provided actionable insight so that adjustments were made before ongoing evaluation. The first two years of MDS implementation showed consistency in evaluation and significant improvements in self-efficacy across eight programs.

Conclusions:

As a result of this study, ECHO Autism leaders can assess and compare program effectiveness, participant characteristics, and demonstrate the program’s impact on autism care. This study highlights the importance of consistent outcome measures for evaluation, enabling data-informed decisions, and continuous improvement of autism care.