TABLE 2

Caregiver and Provider Information Needs and Barriers When Caring for CMC

Information NeedsDescription of NeedPerceived Barriers to Meeting Information Needs
CentralizedInformation should be stored in a single, centralized locationInformation stored in EHRs that are not accessible in all care settings
Paper copies are not always available or “get lost in the shuffle”
Information needs to be retrieved from multiple sources or locations
Information that lives “outside the system” is difficult to retrieve and makes it difficult to know what events are occurring between health encounters “in the system”
Time-consuming for 1 provider to generate and maintain a single, comprehensive, up-to-date care plan
Burden of keeping information often falls on caregivers (“on-call historian”), which results in them having to share information repeatedly or worry about forgetting important information
Limited tools to help families organize vast quantities of health information
TimelyInformation should be available before health care encounters and easily retrievableInformation may not be available before the patient’s arrival
Slow transfer of information between care settings (eg, fax)
Time-consuming to “dig through charts” to find relevant information
Critical information for emergency situations is difficult to find
ConsistentInformation should be consistent across care team members and care settings to “get everyone on the same page”Information is documented in multiple places leading to discrepancies
Multiple existing versions of the care plan leading to inaccuracies
Inadequate documentation of rationale for provider recommendations or changes to the plan of care
HelpfulInformation should help familiarize care team members with the child and provide management guidance because CMC “do not follow the textbook”Current care plans use “1-size-fits-all” and may have too much information or have missing information, depending on the care team member
Content may not be organized in a manner that is helpful for guiding specific health care encounters (ED visit versus follow-up visit)
Information is often not accessible by unfamiliar providers (lives in child’s primary EHR only)