This proposal describes a two-year research study to determine how to leverage cloud-computing technologies to support parents and healthcare providers in collaboratively-maintaining comprehensive and accurate patient health information. The goal of this research is to determine the feasibility, acceptability, and outcomes associated with the use of Cloud Care, a cloud-based multidisciplinary care plan, among parents and providers who care for children with medical complexity. To achieve this goal, the study team will conduct a 15-month, single-center, mixed-methods cohort study in which parents will receive access to their child's Cloud Care profile (N=100) and may share access with providers. We will measure study outcomes using web analytics, surveys, and interviews.
The first aim of this proposal will determine the feasibility and acceptability of Cloud Care. The research team will use web analytics to track Cloud Care usage in terms of the number of reviews and edits performed by parents and providers in total and in response to email alerts. The research team will also conduct an evaluation of acceptability by administering a survey and conducting qualitative interviews at three time-points during the study period.
The second aim of this proposal will determine associations between Cloud Care usage and outcomes such as caregiver burden, parent perceptions of integrated care, and medication list accuracy. Outcomes will be assessed through parent-reported, survey-based measures and parent interviews at baseline and at two additional time-points during the study period. This study will generate data to inform a larger, multi-site, R01 randomized controlled trial powered to determine the effectiveness of Cloud Care for improving patient/family-centered outcomes and patient safety for this vulnerable population of children. By accomplishing the aims in this proposal, Dr. Desai and her team will address critical gaps in our understanding of how to optimize the use of these cloud-based platforms to support team-based content management within the healthcare sector. By eliciting recommendations from parents and providers to enhance Cloud Care's usability through mixed-method research, her team will design interventions that are consistent with their values, preferences and goals. Ultimately, this proposal will inform a larger research program to investigate system-oriented, patient-centered solutions to improve access to comprehensive, coordinated health services for vulnerable children.
Children with medical complexity have extensive hospital and community-based needs requiring effective care coordination across healthcare settings. Patients, parents and providers believe multidisciplinary care plans are an important tool for care coordination; however, existing care plans are often not comprehensive, up-to- date, or readily accessible, diminishing their utility in facilitating care coordination. This proposal will engage parents and providers in a study to test the feasibility, acceptability, and outcomes associated with the use of a novel cloud-based, multidisciplinary care plan for children with medical complexity. The results will provide the foundation for future health information technology interventions to improve care coordination for children with medical complexity.