Preferences for Outcome Data Collection and Access in a Pediatric Autism Learning Health Network Registry

Health professionals participating in learning health networks collect data for informing clinical decision-making, research, and quality improvement (QI). To optimize the collection and use of clinical and Parent Reported Outcome (PRO) data for these purposes, it is important to understand the priorities of patient registry "end users" (clinicians, researchers, and patients/families).

The analysis used a sequential mixed-methods approach with parent (n = 93) and clinician (n = 167) surveys followed by targeted interviews (parent n = 9, clinician/researcher n = 7) completed at Autism Care Network (ACNet) sites to better understand current use of registry data and parent/clinician priorities.

Sixty percent of parents reported receiving behavioral data regarding their child from their health provider in the past, and 90% felt these data would help them understand their child's behavior. Among data access options parents preferred an online portal (72%) and/or the clinic's electronic medical record (59%). Parents indicated willingness to complete surveys longitudinally if the assessments correlated with their child's specific areas of difficulty. Priorities for clinicians included easy access to the data (84%), meaningful connection to clinical outcomes (81%), and measures that can demonstrate change in symptoms over time (76%) and that are easy for families to complete (80%). Both groups recommend assessing parenting stress and social determinants of health.

Consideration of end-user priorities can improve patient registry data collection, analysis, and utilization. Families may be more willing to participate if they can receive direct benefit by accessing their own data and clinicians use this data to optimize clinical care.