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Parental Perceptions of Displayed Patient Data in a PICU: An Example of Unintentional Empowerment
Onur Asan1, Matthew C Scanlon2, Bradley Crotty3
1School of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ.
Insights
Parents in the pediatric intensive care unit (PICU) found real-time electronic health record (EHR) data access empowering, improving awareness and communication. However, concerns about data privacy and interpretation were also raised.
Area of Science:
- Pediatric critical care medicine
- Health information technology
- Family-centered care
Background:
- Parents in pediatric intensive care units (PICUs) often experience limited access to their child's medical information.
- Empowering parents with information can enhance their involvement in care and improve outcomes.
- Health information technology offers potential solutions for improving information access.
Purpose of the Study:
- To explore parental perceptions of real-time open electronic health record (EHR) data displayed in PICU patient rooms.
- To understand the benefits and challenges associated with parents accessing EHR data.
- To identify improvements for family-centered health information technology in the PICU.
Main Methods:
- Cross-sectional qualitative interview study involving 33 parents of PICU patients.
- Data collected through semi-structured individual and small-group interviews.
- Inductive thematic analysis of qualitative data.
Main Results:
- Access to real-time open EHR data positively impacted family empowerment, situation awareness, and facilitated discussions.
- Parents reported potential benefits in error detection and understanding medical information.
- Concerns included data privacy and the potential for misinterpretation of displayed information.
Conclusions:
- Continuous access to open EHR data may empower and engage parents in the PICU.
- Potential drawbacks such as privacy and data interpretation need careful consideration.
- Findings offer insights into the collaborative use of health information technology in PICU settings.
Objectives:
To explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms.
Design:
Cross-sectional qualitative interview study.
Setting:
PICU in a large Midwestern tertiary-care children's hospital.
Subjects:
Parents of patients in a PICU (n = 33).
Measurements And Main Results:
Qualitative data were collected through in-person semi-structured, individual, and small-group interviews. Data were collected from March 2016 to July 2016, with approval from the study hospital's institutional review board. Data were analyzed using inductive thematic analysis. Results included positive effects of accessing real-time open electronic health record data on family empowerment, situation awareness, potential error detection, understanding of medical data, and facilitating discussions during rounds. Concerns were reported regarding privacy of information as well as potential misinterpretation of displayed data. We identified several ways to improve this collaborative technology to make it more family-centered.
Conclusions:
This study suggests that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but potential drawbacks were also noted. The results also provide insights into the collaborative use of health information technology in the PICU setting.
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