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Care coordination panel urges integrating family caregivers into health teams, EMRs and navigation systems
Summary
Experts at the ACL meeting warned that caregivers remain invisible to health systems despite performing medical-level tasks; speakers promoted Medicare billing codes, GUIDE and shared portal approaches to identify caregivers, provide training, and improve interoperability.
Speakers on the care coordination panel argued that integrating family caregivers into medical teams and information systems is a high-priority, practical step to reduce caregiver strain and improve patient outcomes.
Robyn Golden (Rush University) described care coordination as an evidence-based intervention with low adoption and argued that caregivers are routinely excluded from clinical workflows. She highlighted new Medicare physician-fee-schedule codes that can reimburse caregiver training and care-management activities and mentioned the GUIDE model for dementia care as a promising payment-and-practice approach. “Less than a third of family caregivers say a member of the care recipient’s health care team has asked them about the support they need to provide care,” Golden said.
Deborah Stone-Walls (USAging) described how Area Agencies on Aging (AAAs) are increasingly contracting with health systems and offering caregiver navigation and care-transition services. USAging survey data cited in the session showed an increase in AAAs offering access assistance (from 66% in 2022 to 76% in 2025) and growing participation in Community Care Hub contracting (22% in 2017 to 39% in 2025).
Jennifer Wolff (Johns Hopkins) urged routine monitoring of caregiver capacity at the point of care and argued policymakers and providers need measures that distinguish caregiver roles (emotional support, therapeutic agent delivering medical tasks, and caregiving as a role requiring its own supports). Panelists discussed practical steps: shared portal access for care partners, explicit caregiver records or fields in electronic health records, voluntary caregiver assessments, and measured deployment of AI to improve navigation while preserving human touch.
Panelists also discussed HIPAA and operational steps to allow patient-authorized caregiver access to notes and portals. The Coalition for Care Partners and the CARE Act were highlighted as models to promote shared information and discharge instruction practices.
Panelists recommended that the National Strategy update emphasize caregiver identification in clinical settings, broader adoption of Medicare codes that reimburse caregiver-support activities, and shared-portals/interoperability pilots that enable caregivers to contribute observations and receive timely guidance.
