While the Veterans Affairs hospital has piloted use of a document based on data from electronic provider orders to summarize the daily plan of care
, we believe YBDU to be the first published example of the design and implementation of a printed patient update using EMR data in pediatrics. Our findings suggest that YBDU positively impacted communication and parent engagement, resulting in improved perceived competence to manage information in the NICU.
Use of personal health records and online patient portals remain an elusive goal nationally
, but our simple approach can be replicated in different EMR environments regardless of vendor. Also, because the letter is printed, it transcends the potential “digital divide” of the families we serve. One particularly interesting finding was that YBDU was a source of information for 89% of parents in the post-survey, second only to conversations with the nurse (96%), and even ahead of conversations with the MD (78%). However, YBDU did not replace or decrease rates of information received from conversations with the MD (no statistically significant difference pre and post). These data suggest that parents found YDBU to be a useful supplement to the information they were already receiving from caregivers.
There are several factors to which we attribute the success of this intervention. First, YDBU content was based on our collective experiences in communicating with parents in the NICU. Recognizing the common questions asked by NICU parents each day, we included information such as weight, void counts, feeding information, and lab results. Second, because we leveraged data that is already documented discretely in the EMR, the creation of this letter is a byproduct of routine clinical workflows, rather than a new burden. Finally, as the authorship of this paper suggests, YDBU represents an interdisciplinary collaboration between parents from our family-centered care department, physicians, nurses, and informaticists.
Limitations to our survey data include those inherent to self-reported surveys (e.g. poor memory, misinterpretation of questions, bias). One specific example of selection bias relates to primary language, as YBDU was only available in English at the time of the study. Because the study did not include a control group, it is possible that the increased perception of competency to manage health information in the NICU was the result of parents in the post-intervention period having a increased baseline ability to manage health information. Finally, the relatively small sample size is one potential explanation for the lack of statistically significant differences between individual knowledge items.
The hospital setting can pose multiple barriers to effective, consistent communication between health care providers and parents. We believe YDBU serves as one tool to help mitigate these barriers, with minimal additional time or work for the health care providers. The update can be especially valuable for parents who cannot consistently be present in the unit to speak with health care providers during key times, those who prefer to review and interpret information visually, and families who are high-information seeking.
Because approximately 40% of our patient population in the NICU is Spanish-speaking, following the study period, a Spanish version of YBDU was introduced. The tool may prove even more valuable for non-English speaking parents since communication with them may be limited or rely on an interpreter. Providing daily updates written in a family’s primary language helps ensure that at least basic information is shared with parents each day.
Your Baby’s Daily Update
is now in use in our level III NICU as well as the level II nursery. We have created a process to make distribution to families more consistent, with “mailboxes” at each bedside allowing for easy, organized delivery of the handouts each day. Anecdotally, we find that parents will request their daily copy of YBDU if they find that it has not been delivered to them during the day. The updates have encouraged bidirectional communication; parents speak with bedside nurses about the content of the letter, and occasionally seek out the attending, nurse practitioner, or resident caring for their child to discuss items on YBDU with them. Future development efforts may include email distribution for parents who prefer this method, iteration of the current content, inclusion of new content, and workflow changes to support bidirectional communication further. Interestingly, other services are now creating customized versions of this communication tool to serve their own patient populations (e.g. children with febrile neutropenia on the oncology service). Because engaging parents and increasing their understanding of information in the NICU has been shown to affect other measures of parent engagement, such as involvement in physical care and shared decision making[3,4]
, evaluating similar outcomes and infant related clinical outcomes including length of stay presents an opportunity to further quantify the impact of EMR-generated daily update letters in the NICU.