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

This study looked at how families and doctors want to collect and share information about autistic children. Most parents (90%) said that getting data about their child's behavior would help them understand their child better. Parents preferred to access this information through online websites or their doctor's computer system. Both parents and doctors thought it was important to include questions about family stress and social factors that affect health.

This mixed-methods study examined preferences for data collection and access in a pediatric autism learning health network registry. Researchers surveyed 93 parents and 167 clinicians, followed by targeted interviews. Key findings include that 60% of parents had previously received behavioral data about their child, with 90% believing such data would help them understand their child's behavior. Parents preferred online portals (72%) and electronic medical records (59%) for data access.

Clinicians prioritized easy data access (84%), meaningful clinical connections (81%), and measures demonstrating symptom changes over time (76%). Both groups recommended assessing parenting stress and social determinants of health. The study suggests that considering end-user priorities can improve registry participation and clinical utility.

Healthcare systems should prioritize user-friendly data access platforms and ensure data collection aligns with clinical decision-making needs. Including parenting stress and social determinants assessments may improve care comprehensiveness. Direct family access to their data may increase registry participation and clinical engagement.

Study conducted at specific Autism Care Network sites which may limit generalizability. Sample characteristics and methodology details not fully described in the abstract. Response rates and potential selection bias not reported.

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.