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To evaluate the impact of using electronic medical record (EMR) data in the form of a daily patient update letter on communication and parent engagement in a level II neonatal intensive care unit (NICU).
Parents of babies in a level II NICU were surveyed before and after the introduction of an EMR-generated daily patient update letter, Your Baby’s Daily Update (YBDU).
Following the introduction of the EMR-generated daily patient update letter, 89% of families reported using YBDU as an information source; 83% of these families found it “very useful”, and 96% of them responded that they “always” liked receiving it. Rates of receiving information from the attending physician were not statistically significantly different pre- and post-implementation, 81% and 78%, respectively (p = 1). Though there was no statistically significant improvement in parents’ knowledge of individual items regarding the care of their babies, a trend towards statistical significance existed for several items (p <.1), and parents reported feeling more competent to manage information related to the health status of their babies (p =.039).
Implementation of an EMR-generated daily patient update letter is feasible, resulted in a trend towards improved communication, and improved at least one aspect of parent engagement—perceived competence to manage information in the NICU.
Parents of newborns in the Neonatal Intensive Care Unit (NICU) are thrust into an unfamiliar environment, where health care providers may use medical terminology the parents have yet to learn. Educating NICU parents about their babies and engaging them in the care of their newborns is a challenge: in addition to trying to learn what to expect each day in the NICU, parents are adjusting to having delivered a critically ill infant, getting to know their new baby, and may be experiencing the role of being a parent for the first time.
The information families receive about their baby’s medical care and health status can vary substantially. This information is dependent upon the health care provider’s position, communication style, knowledge, and availability to update the families; as well as the parents’ availability and desire to speak with care providers. On a given day during a baby’s NICU stay, some families receive a thorough daily report from multiple providers (nurse, nurse practitioner, or doctor), while others may get only minimal information. When contact is made with a provider, the information communicated might range from a quick general description about the day’s events, to an overly detailed account of the previous 24 hours that fails to reveal the “big picture”.
However, when NICU parents are more knowledgeable about their baby’s health status and medical care, they are empowered to be more involved in the hands-on care of their baby and to contribute to medical decision-making regarding their infant. Programs aimed at increasing parent engagement have been shown to decrease NICU length of stay; to improve parent well-being and satisfaction; and to be beneficial for the NICU care team[3,4].
Electronic Medical Records (EMRs) increase providers’ access to information, but the use of EMRs to improve communication with parents is more limited. Providing access to a child’s electronic chart (via a patient portal or personal health record, for example) allows access to clinical data, but may not provide meaningful information out of the context of a patient’s overall condition. Nonetheless, approaches that increase access to clinical data have been shown to increase patient and provider satisfaction.
Providers and the Family Advisory Council from the NICU at St. Barnabas Medical Center represent one example of using information technology to improve family access to clinical information via daily updates generated by the EMR, which anecdotally were well received by parents. Inspired by the promise of this work, we developed an EMR-generated daily parent update, Your Baby’s Daily Update (YBDU), and hypothesized that its implementation would increase parent engagement by improving communication and increasing parents’ knowledge and understanding of their babies’ health statuses.
Parents of babies in the Lucile Packard Children’s Hospital (LPCH) level-II intermediate intensive care nursery were surveyed before and 6-months after the implementation of the EMR-generated daily parent update. LPCH is a 311-bed quaternary care women and children’s hospital in Palo Alto, CA, USA; it is the principal academic children’s hospital affiliated with Stanford University. Of the 74 NICU beds at the main LPCH campus, 32 are level-II intermediate intensive care beds. LPCH is considered a highly automated hospital, corresponding to Stage 6 on the Healthcare Information and Management Systems Society Analytics EMR adoption model: the EMR includes laboratory and radiology results, computerized provider order entry, clinical nursing documentation, electronic physician documentation, data warehousing, and the ability to share data via electronic transactions both internally and externally.
An EMR-generated daily parent update letter, Your Baby’s Daily Update, was implemented with a commercial EMR (Millennium, Cerner, Kansas City, MO, USA) in October 2010 for families of babies in the level II step-down NICU. The daily parent update prints automatically from the EMR, and includes information about a baby’s status during the past 24 hours: members of the baby’s care team, weight/nutritional status, respiratory status, current medications, and certain recent laboratory results (Figure 1). Of note, these data elements are charted in the EMR as a byproduct of routine nursing and clinical workflow; no new/additional work was necessary to support the introduction of the daily parent update letter. Finally, the letter includes space for a hand-written update, which is completed daily by the baby’s care provider. This process allows the provider to review the contents of the automated report, provide summary comments, or include additional information about the care plan before the letter is handed to parents. At time of this study, the letter was printed only in English, though a Spanish version is now available.
A parent mentor delivered pre- and post-implementation surveys to each bedside in the level II NICU. From April through September 2010, a pre-implementation survey was administered to determine the methods by which parents received information; how knowledgeable they were about specific aspects of their baby’s daily care and status; and their perceptions about getting the information they need and feeling competent to manage it. Six months following the introduction of YBDU, a similar survey was administered from April through October 2011, which differed by including items that addressed adoption of and satisfaction with YBDU. Surveys were anonymous and contained no personal identifiers.
Descriptive summary of the data consisted of frequency counts and percentages. The Wilcoxon rank- sum test was used for comparison of ordinal variables, and Fisher’s exact test for independence was used for categorical variables. The analysis was performed with R statistical package (R 2.12.2 for Mac OSX Cocoa GUI 1.36 Leopard build 64-bit, The R Foundation for Statistical Computing, Vienna, Austria).
A total of 31 families of babies in the level II NICU at LPCH completed the pre-implementation survey, and 26 families in the same unit responded to the post-implementation survey. The estimate survey response rate was 35–40%. After its introduction, 89% of families reported using YBDU as an information source; conversations with the bedside nurse were the only more prevalent source of information (Table 1). The rate of receiving information from the was not statistically significantly different pre- and post-implementation: 81% and 78%, respectively (p = 1).
On the post-implementation survey, 83% of families who used YBDU as an information source reported that it was “very useful”, the highest usefulness rating available. Conversations with the nurse and doctor were rated “very useful” by 85% and 88%, respectively (Figure 2). When asked to rate the statement “I like receiving Your Baby’s Daily Update”, 96% of families who used YBDU as an information source responded with the highest rating, “always”.
Items addressing a family’s knowledge of specific aspects of their infant’s care were not statistically significantly different before and after the introduction of YBDU, although several showed a trend towards significance with p <.1 (Figure 3). Before and after YBDU was introduced, there was no statistically significant difference between families’ perceptions about getting the information they need about their baby’s health status (p = .318). However, following implementation of YBDU, families reported feeling more competent to manage information related to the health status of their babies (p =.039) (Figure 4).
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.
This project demonstrates the feasibility of implementing an EMR-generated daily patient update letter to enhance communication and patient/family engagement, which both our survey data and anecdotal evidence support. We hope this report will encourage other highly automated institutions to consider designing and implementing printed patient updates using EMR data.
We thank St. Barnabas Hospital for sharing their experience of implementing an EMR-facilitated parent update with us. We also acknowledge the Vermont Oxford Network, which facilitated the opportunity for hospitals to collaborate and share their experiences on quality improvement work. This work was supported by the National Library of Medicine at the National Institutes of Health under Biomedical Informatics Research Training Grant 5 T15 LM 7033. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH.
Competing Interests: The authors declare no competing interests.