Caregiver Perspectives on Informed Consent for a Pediatric Learning Healthcare System Model of Care

Background: Data is needed to provide insight into the issue of preference around consent for use of pediatric clinical data for research. This study evaluated caregivers’ preferences concerning use of their child’s clinical information. Methods: Caregivers of children (n = 101; response rate 81.5% of n = 124) presenting for psychological evaluation at an urban medical center viewed a video regarding how the information contained in their child’s medical record could be used for research. Results: An anonymous survey following the video indicated that: 1) >90% of caregivers felt comfortable with their child’s information being used; 2) >90% of caregivers felt their child’s privacy would be adequately protected; 3) 98% of caregivers reported themselves to be as or more likely to return to the institution after viewing the video; 4) 60% of caregivers felt no additional consent procedures beyond viewing the video were needed, while 20% preferred an opt-out and 20% preferred a traditional consent procedure. Caregiver demographic variables were largely unrelated to consent preferences. Discussion: Overall, caregivers reported strong support for use of their child’s clinical data for research purposes.