Parental Perceptions of Displayed Patient Data in a PICU: An Example of Unintentional Empowerment

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.