Differing perspectives on parent access to their child’s electronic medical record during neonatal intensive care hospitalization: a pilot study

Abstract

Objective: To improve informed medical decision-making, principles for family-centered neonatal care recommend that parents have access to their child’s medical record on an ongoing basis during neonatal intensive unit care (NICU) hospitalization. Currently, many NICUs do not allow independent parent access to their child’s electronic medical record (EMR) during hospitalization. We undertook a cross-sectional survey pilot study of medical professionals and parents to explore opinions regarding this practice. Study design: Inclusion criteria: 18-years old, English-literate, legal guardian of patients admitted to the NICU for 14 days. NICU medical professionals included physicians, nurse practitioners, nurses, and respiratory therapists. Result: Medical professionals believed parent access would make their work more difficult, increase time documenting and updating families, making them more liable to litigation and hesitant to chart sensitive information. However, parents felt that they lacked control over their child’s care and desired direct access to the EMR. Parents believed this would improve accuracy of their child’s medical chart, and increase advocacy and understanding of their child’s illness. Conclusion: NICU parents and medical professionals have differing perspectives on independent parental access to their child’s EMR. More research is needed to explore the potential of independent parental EMR access to further improve family-centered neonatal care.