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

Asan, Onur PhD1; Scanlon, Matthew C. MD2; Crotty, Bradley MD3; Holden, Richard J. PhD4; Flynn, Kathryn E. PhD5

Pediatric Critical Care Medicine: May 2019 - Volume 20 - Issue 5 - p 435-441
doi: 10.1097/PCC.0000000000001895
Feature Articles

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.

1School of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ.

2Department of Pediatrics, Division of Critical Care, Medical College of Wisconsin, Milwaukee, WI.

3Center for Advancing Population Science, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI.

4Department of Medicine, Indiana University School of Medicine, Indianapolis, IN.

5Department of Medicine, Medical College of Wisconsin, Milwaukee, WI.

*See also p. 492.

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Supported, in part, by the Agency for Healthcare Research and Quality (Grant no. 1R21HS023626-01) for this study.

Drs. Asan’s, Scanlon’s, and Crotty’s institutions received funding from Agency for Healthcare Research and Quality (AHRQ) R21HS023626 and received support for article research from AHRQ. Dr. Crotty received funding from equity interest in Buoy Health, Apple, Johnson & Johnson, GlaxoSmithKline, General Electric, Microsoft, and IBM. Dr. Holden received funding from consulting on research projects for Medical College of Wisconsin, Oregon Health & Sciences University, and Peterson Center for Healthcare. Dr. Flynn disclosed that she does not have any potential conflicts of interest.

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Copyright © 2019 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies