A Feasibility Study of Cloud-Based Care Plans for Children with Medical Complexity (Washington)

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The use of a cloud-based, multidisciplinary care plan--Cloud Care--may improve care coordination for children with medical complexity and provide the foundation for a future digital health intervention to address gaps in care.

Project Details - Ongoing

Summary:

The absence of a centralized health information system is a fundamental reason patients in the United States experience fragmented care. The fragmented healthcare system leads to high caregiver burden, ineffective communication between members of the care team, and patient safety issues. These outcomes are particularly worse for children with medical complexity (CMC). CMC have extensive hospital and community-based needs requiring effective care coordination across healthcare settings; given that the population of CMC continues to grow, it is imperative to prioritize finding solutions to address these gaps in care.

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. Care plans should be developed in partnership with families and should be readily accessible to all those engaged with the child and family. As components of multifaceted interventions, care plans have been associated with improved care experiences and patient-reported outcomes in pediatric and adult populations.

This study will test the feasibility, acceptability, and outcomes associated with the use of a novel cloud-based, multidisciplinary care plan, Cloud Care, for children with medical complexity. The results will provide the foundation for future digital health intervention to improve care coordination for children with medical complexity.

The specific aims of this study are as follows:

  • Determine the feasibility and acceptability of Cloud Care among parents and providers who receive access to a child’s Cloud Care profile during the study period. 
  • Determine associations between Cloud Care usage and patient- and family-centered outcomes and medication list accuracy from baseline to 9 and 15 months post-enrollment. 

Investigators will conduct a 15-month, single-center, mixed-methods cohort study in which parents will receive access to their child’s Cloud Care profile and may share access with providers. Providers who are granted access to the child’s Cloud Care profile will also be enrolled as study subjects. A trained clinical research nurse will abstract data from the child’s Seattle Children’s Hospital (SCH) electronic health record to populate provider sections within the child’s care plan. Parents will be invited to populate the parent sections of their child’s care plan. Care plan information within Cloud Care is based on content priorities highlighted by parents and healthcare providers. After the initial care plan has been created, parents will receive access to share the care plan with other providers. All care team members (parents and providers who are granted permission to access the care plan) will have the ability to review and edit the care plan in real time throughout the study period.

Investigators will use web analytics to collect individual usage metrics on a weekly basis for each parent or provider enrolled in the study. They will evaluate the acceptability of Cloud Care by administering a survey and conducting qualitative interviews at three timepoints during the study period. Outcomes will be assessed through parent-reported, survey-based measures and parent and provider interviews at baseline and at two additional timepoints during the study period. This study will generate data to inform a larger, multi-site, randomized controlled trial powered to determine the effectiveness of Cloud Care for improving patient- and family-centered outcomes and patient safety for this vulnerable population of children.