D. O. Gonzalez1, Y. Sebastiao1, J. N. Cooper1, M. Levitt1, R. J. Wood1, K. J. Deans1 1Nationwide Children’s Hospital,Columbus, OH, USA
Introduction: A rapid learning healthcare system (RLHS) can deliver near-real time data to physicians and families about a disease and its outcomes based on specific patient characteristics. Giving families access to a RLHS may increase patient engagement, improve their knowledge, and lead to better outcomes. This study investigated the impact of allowing families of pediatric patients with complex colorectal diseases access to a RLHS on patient-centered outcomes.
Methods: We created a RLHS that integrates pre-specified data elements and validated surveys within the clinical workflow into the electronic health record. The RLHS is an interactive dashboard which contains information on a number of data points, including demographics, quality of life (QOL), surgical outcomes, complications, and continence. We performed a randomized trial of caregivers of children <18 years of age with an anorectal malformation, Hirschsprung disease, or functional constipation visiting our colorectal center. Prior to their initial office visit, participants were randomized to either standard surgical consultation or open access to the RLHS in addition to a standard consultation. To determine the effect of open access to the RLHS on patient-centered outcomes, we assessed healthcare satisfaction, quality of life (QOL), parent activation, health literacy, and caregiver knowledge about their child’s diagnosis. Outcomes between groups were compared at the end of the initial office visit and at 30 days. For participants randomized to the RLHS group, system usability was assessed and an exit interview conducted.
Results: Of 126 participants, 62 were randomized to the RLHS group and 64 were randomized to standard consultation. There were no differences in age, gender, or diagnosis between the patients and no differences in demographics between the caretakers in both groups. At the end of the initial clinic visit, there were no differences in healthcare satisfaction, QOL, parent activation, health literacy, and knowledge of disease between groups. After 30-day follow-up, there were no differences in healthcare satisfaction, QOL, and knowledge of disease. The usability and learnability of the RLHS were ranked 73.0 and 80.4, respectively, on a 100-point scale. Most participants reported that the RLHS included a lot of useful information and was easy to use. Approximately 25.0% of participants reported feeling overwhelmed when looking at the information on the RLHS, but only 3.6% reported that it increased their stress level. The majority of participants (83.9%) would recommend that we provide RLHS access to all families.
Conclusion: Although providing access to the RLHS did not affect patient-centered outcomes, the majority of patients recommended providing families access to this type of system. Although access to the information in the RLHS overwhelmed some of the patients, it did not affect the stress level of the vast a majority of patients.