273 - NICU Family Access to Medical Record Health Information: Parents Love it, but Neonatologists Don’t

Poster Number: 273
Publication Number: 273.1920

Background: The 21st Century Cures Act (CCA) was signed on 12/2016, requiring all patients to have access to medical records free of charge and without delay. Awareness and implementation of the CCA among parents of infants admitted to the neonatal intensive care unit (NICU) and their providers is unknown.

Objective: To determine NICU parent and neonatologist awareness of the CCA and examine parent and physician opinions of this law’s potential impact on communication, the physician-patient relationship, and health equity.

Design/Methods: Parents of infants admitted to the NICU after 12/2016 were surveyed through Project Sweet Peas Facebook group posts and the NICU Parent Network newsletter. Neonatologists were surveyed nationally through the American Academy of Pediatrics (AAP) Section on Neonatal-Perinatal Medicine (SoNPM) email listserv. We assessed self-reported demographics. We examined awareness of the CCA and opinions regarding the impact of parental health information access on communication with providers, understanding of medical care, satisfaction, healthcare quality, and health inequities, measured as 5-point Likert scales. We compared average responses of parents and neonatologists using t-tests.

Results: 252 neonatologists and 144 parents responded. Neonatologists worked in 43 states; 22% were multilingual and mean years of experience was 17. Mean parent age was 38 years; 44% were college graduates and 53% had graduate education. While 94% of neonatologists were aware of the 21st CCA, only 41% of parents were (p-value < 0.001). Most NICU parents (65%) did not receive information accessing health records while their children were admitted. However, 94% wished they had received this information. Mean Likert scales of opinions between parents and neonatologists are shown in the table. Parents viewed factors of interest more favorably (higher mean Likert scales) than neonatologists.

Conclusion(s): While most neonatologists were aware of the 21st CCA, we found that in our sample of highly educated parents, only 41% were aware. Parents viewed the impact of parental health information access on improving communication, healthcare quality, and equity more favorably than neonatologists.