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Data Collection I

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Data collection gathers information needed to make accurate judgments about a patient's present condition. During a health history interview, subjective data is collected from the patient, their caregivers, or family members, and objective data is collected through observations and physical assessment. Patients are the primary source of subjective data. Thus information gathered from patients through interviews, observations, and physical examination is primary data. Secondary sources of...

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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

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

Donna S Murray¹, Julia S Anixt¹, Vijay Vasudevan²

¹Division of Developmental & Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Department of Pediatrics, Cincinnati, OH.

Journal of Developmental and Behavioral Pediatrics : JDBP

|August 21, 2025

Summary

Understanding patient registry end-user priorities, including parents and clinicians, is key to improving data collection and use in learning health networks. Direct data access for families and clear clinical benefits enhance participation and care.

Keywords:

outcome data patient-reported outcomes (PRO)quality improvement (QI) registries

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Area of Science:

Health Services Research
Clinical Informatics
Patient-Reported Outcomes

Background:

Learning health networks utilize clinical and Parent Reported Outcome (PRO) data for decision-making, research, and quality improvement.
Optimizing data collection and use requires understanding the priorities of diverse patient registry end-users: clinicians, researchers, and patients/families.

Purpose of the Study:

To investigate the priorities of parents and clinicians regarding the collection and utilization of patient registry data.
To identify factors influencing parent and clinician engagement with registry data within the Autism Care Network (ACNet).

Main Methods:

A sequential mixed-methods approach was employed, starting with surveys of parents (n=93) and clinicians (n=167).
Targeted interviews with parents (n=9) and clinician/researchers (n=7) were conducted at ACNet sites.
The study focused on understanding current registry data use and identifying key priorities for both parent and clinician groups.

Main Results:

60% of parents had previously received behavioral data, with 90% believing it aids understanding; preferred access was via online portals (72%) or electronic medical records (59%).
Parents expressed willingness for longitudinal surveys if assessments correlated with their child's difficulties; clinicians prioritized easy data access (84%), clinical outcome relevance (81%), and measures of symptom change (76%).
Both groups recommended assessing parenting stress and social determinants of health; clinicians also valued ease of completion for families (80%).

Conclusions:

Incorporating end-user priorities can significantly enhance patient registry data collection, analysis, and application.
Providing families direct access to their data and demonstrating its utility in optimizing clinical care can increase willingness to participate.
Aligning data collection with user needs is crucial for effective learning health systems and improved patient outcomes.