Strengthening Consent-to-Share and New Resources for CalAIM Data Sharing – 5/9 C4BH Meeting

Advancing consent-to-share models that enable and strengthen care coordination is critical for whole-person care and integrated systems. On May 9, Connecting for Better Health was joined by Daniel Stein and Dr. Mohammad Jafari to discuss recent learnings and developments related to consent. In addition, the coalition meeting highlighted two new resources that support data exchange between health care entities and community-based organizations for efforts such as CalAIM in California.

The Importance of Consent and Innovative Models for Consent

Obtaining consent-to-share is critical to cross-sector data sharing, and necessary for seamless care coordination. Right now, vital health information is often sequestered between organizations, making it difficult for providers to have a comprehensive understanding of the patient’s health and social history. Daniel Stein, President and Co-Founder of Stewards of Change Institute, joined the coalition to speak about the Consent Learning Lab held at the HIMSS Conference in March 2024. At the learning lab, participants joined educational panels and interactive sessions to discuss a uniform consent model template, review existing consent authorization forms, and apply consent-to-share learnings to use cases. The Learning Lab underscored the importance of a “Modular Uniform Consent Model Template” to support care coordination across health and social services. 

Dr. Mohammad Jafari, Senior Privacy Consultant and Integration Specialist, spoke next about his newly published “Pediatric Consent on FHIR” paper. The model examined by Jafari in the paper utilizes FHIR to manage consent questionnaires, which can be mapped into raw responses and rendered into web pages or apps for easy patient access. While discussed in the context of consent-to-treat in Jafari’s paper, the computational approach is applicable to consent-to-share processes, and one potential step towards statewide consent management in California. 

At the local, state, and federal levels, continuing momentum on consent-to-share is vital in advancing uniform models that better serve patients and providers.

New Resources to Support CalAIM Implementation with Data Exchange through the DxF

As California Advancing and Innovating Medi-Cal (CalAIM) continues to be implemented across the state, effective data exchange is crucial for its success. C4BH welcomed Shirley Lam, Assistant Director of Policy at the Insure the Uninsured Project (ITUP), and Andrea Frey, Partner at Hooper Lundy & Bookman, to discuss newly released resources that help support organizations engaging in cross-sector data exchange.

ITUP’s “Leveraging Data to Advance Health Equity and Success in CalAIM” highlights the critical role of accessible and equitable data policy to accelerate CalAIM’s initiative. Accessibility to Health and Social Services Information (HSSI) is fundamental to CalAIM’s mission and without it, health and social providers cannot communicate with one another. The issue brief highlights how effective data sharing improves care quality, Enhanced Care Management (ECM) care coordination, Community Supports, and the justice-involved initiative. Lam emphasized the importance of the DxF in addressing data silos, incomplete community data sets, and the lack of coordination of social services and clinical care that disproportionately impacts marginalized populations.

Frey presented C4BH’s new fact sheet titled: Cross-Sector Data Sharing: HIPAA Considerations For Data Exchange Between Health Care Entities and Community-Based Organizations. The fact sheet outlines how sharing Patient Health Information (PHI) between covered entities and Community Based Organizations (CBOs)/Social Service Organizations (SSOs) is allowed for treatment purposes, including care coordination and case management activities, without needing individual authorization as long as the data is sent in a secure manner. 

Furthering Consent and CalAIM Data Exchange 

Improving consent-to-share is crucial for the success of health care transformation initiatives in California, including CalAIM. C4BH looks forward to continuing our work to support statewide consent management to enable whole-person care and care coordination that includes CBOs and SSOs.


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