Cloud Care: A Feasibility Study of Cloud-Based Care Plans for Children With Medical Complexity

Care in the US is fragmented, partially because of the lack of a centralized health information system. This fragmentation increases caregiver burden, results in ineffective communication within the care team, and may lead to patient safety issues. Children with medical complexity (CMC) are more vulnerable to this fragmentation because their care comes from multiple specialty physicians, home health providers, therapists, community services, and school staff. Without a centralized record, those providing such care lack a complete view of a child’s health and care plan. While multidisciplinary care plans have been shown to improve care experiences and patient-reported outcomes in both pediatric and adult populations, the current state is that these plans are typically static and shared between providers by being printed on paper and scanned into an electronic health record (EHR).

The use of an electronic multidisciplinary care plan that is portable and able to be updated electronically by any member of the care team, including caregivers, would be expected to improve outcomes and the care experience. This research examined the feasibility, acceptability, and outcomes associated with the use of a cloud-based longitudinal multidisciplinary care plan for CMC called Cloud Care.

The specific aims of the research were 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. 

A mixed-methods study was conducted over 3 years at a single center. Twenty-nine child-parent dyads and 473 parents were enrolled. Parents were able to access their child’s Cloud Care profile and could share access to it with their child’s healthcare providers. Study outcomes were measured using web analytics, surveys, and interviews. While the researchers had planned to collect medication accuracy data and to collect data at 9- and 15- months post-enrollment, collection of this data was more difficult than expected due to the COVID-19 pandemic and thus data collection was limited to the 6-month post-enrollment assessment.

Seventy-eight percent of parents and 47 percent of providers adopted the system. Feasibility – perception of ease of use of the system – was high among parents but mixed among providers. Acceptability, which considered completeness, accuracy, and usefulness of information, was mixed among the users. Barriers to use included an inability to view the care plan anywhere other than the child’s primary EHR or patient portal, and the lack of data being able to flow between the EHR and Cloud Care.

It was noted that successful implementation of cloud-based care plans requires a team of owners, a notification system, and a match of structured data fields between the care plan and the EHR. The researchers noted future research opportunities of having a portal directly linked to the EHR and testing real-time collaborative management of information that could result because of such a linkage.