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Parent Experiences Accessing Inpatient Clinical Notes on a Pediatric Oncology Service
Madeline Q Kieren1, Cathy Lee-Miller1, Catherine Arnott Smith2
1Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
Insights
Parents using bedside tablets to access their child
Area of Science:
- Pediatric Healthcare
- Health Informatics
- Patient Engagement
Background:
- Despite the 21st Century Cures Act, parent access to clinical notes remains low.
- Parents are crucial for patient safety but face challenges staying informed.
- Limited access to written clinical information hinders parental involvement.
Purpose of the Study:
- To evaluate parent access to and experiences with clinical notes via bedside tablets.
- Focus on children's oncology hospitalizations.
- Assess the impact of real-time note access on parent engagement.
Main Methods:
- Mixed methods study involving parents of children under 12 admitted to an oncology service.
- Real-time note access provided through a patient portal on bedside tablets.
- Data collected via electronic tracking, OpenNotes surveys, and semistructured interviews.
Main Results:
- All 25 participating parents accessed clinical notes, with a mean of 31 notes per parent.
- Nearly half (49%) of all shared notes were accessed by parents.
- Most parents found notes understandable and useful, though 20% identified potential inaccuracies, 60% of which were safety concerns.
Conclusions:
- Bedside tablet access to clinical notes is beneficial for parents in pediatric oncology.
- Support is needed for parents navigating complex medical information.
- Systematic processes are required to address parent-identified safety concerns.
Background:
Despite the 21st Century Cures Act mandating open access to clinical notes, parent engagement remains low, with less than 10% accessing notes during their child's hospitalization at our children's hospital across all services. Parents play a critical role in patient safety but often experience challenges staying informed due to limited access to written clinical information.
Objective:
Evaluate parent access to and experiences with clinical notes using a bedside tablet during their child's oncology hospitalization.
Methods:
In this mixed methods study, parents of children younger than 12 years admitted to an oncology service from August 2022 to June 2023 received real-time note access via a 4-digit login to the patient portal application on a bedside tablet. Note access was electronically tracked. Parent experiences were assessed using OpenNotes survey items and semistructured interviews analyzed using conventional content analysis.
Results:
All 25 parents accessed at least 1 note, with a mean of 31 notes per parent (range: 1-134). Of 1599 notes written, 1594 (99.7%) were shared to the portal, and 781 (49.0%) were accessed. Most parents found notes understandable (92%) and useful for tracking daily plans and discharge goals (80%). Five parents (20%) identified possible inaccuracies; 60% were confirmed safety concerns (eg, medication error). Note access increased parent self-efficacy in understanding their child's care, evoked a spectrum of emotions, and required management of complex medical information.
Conclusion:
Although most parents found notes beneficial, efforts are needed to support parent navigation of complex information and systematically address parent-identified safety concerns.
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