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C4BH CDII Centralized Roster Service RFI Response

January 10, 2025

Jacob Parkinson, QHIO Program Manager, Center for Data Insights and Innovation

Re: Centralized Roster Service Request for Information

Dear Mr. Parkinson,

On behalf of the Connecting for Better Health (C4BH) coalition, thank you for the opportunity to respond to the Request for Information on a “Centralized Roster Service” to enhance health and social data sharing in California. We applaud the Center for Data Insights and Innovation (CDII)’s pursuit of a centralized roster service to address foundational barriers to actionable, real-time data sharing under the Data Exchange Framework (DxF). 

C4BH is a diverse coalition of providers, patient advocates, caregivers, health plans, technology innovators, and community-based organizations dedicated to advancing health and social data sharing to improve the health of all Californians. Our vision is that every Californian and their care team will have the information and insights they need to make care seamless, high-quality, and affordable. The coalition strongly believes a centralized roster service is critical and necessary to support accurate and up-to-date roster management to enable DxF Participants to more effectively request notifications for individuals in their care, determine where to route notifications, and query for an individual’s information. 

Please see our responses below in regard to two RFI questions with our collective feedback and policy recommendations: 

1. Should the service include person matching capabilities, and if so, to what extent?

C4BH believes patient matching capabilities must be included to reconcile discrepancies across rosters. Variability in roster approaches across organizations in California result in rosters that differ in standards, format, and completeness. Robust patient matching will be essential to harmonize individual identities across rosters to identify true and complete connections between patients and their associated providers and health plans. 

A centralized roster service can be transformative for data sharing in California by establishing a statewide person index to serve as a Record Locator Service, and additionally, as core infrastructure for consent management registries. A statewide person index that is readily available to direct data queries and support the management of individual authorizations across systems will make immediate improvements to statewide health data sharing and support the integration of social care data required for CalAIM. We encourage CDII to reference the California Health and Human Services DxF Strategy for Digital Identities (2022) for additional considerations in establishing a statewide person index. For example, an index could be created with all medical record numbers as an unique identifier associated with an individual and include their associated providers and health plans. 

 In the current landscape, the DxF Qualified Health Information Organizations (QHIOs) largely rely on submitted rosters to route event-based notifications, which places considerable burden on providers to maintain and frequently update. Due to significant legal challenges, it is unlikely QHIOs could reshare roster information with the statewide roster service as a potential solution. To move California beyond standard processes for health information exchange, we recommend a centralized roster service be developed with a dynamic approach by informing and augmenting submitted rosters with state, health plan, or other data sources to update and maintain accuracy while reducing provider burden. For example, while encounter data collected by health plans is extensive and complex, other information maintained by health plans should be considered, such as member assignment data that tracks the primary care provider or clinic assigned to an individual.

 Additionally, the public-private service should seek to leverage existing patient matching infrastructure maintained by the state if available, including California’s All-Payer Claims Database (APCD), the Department of Health Care Service (DHCS) Population Health Management (PHM) service, the Department of Justice (DOJ) Controlled Substance Utilization Review and Evaluation System (CURES), the California Emergency Medical Services Authority (EMSA) Physician Order for Life Sustaining Treatment (POLST) registry, and the California Department of Public Health (CDPH) immunization, birth and death, and other disease registries. 

2. How should the service be governed?

We believe advancing overall DxF governance is essential to health and social data sharing in California, and will also support the utility of a centralized roster service and overarching digital identities strategy. Robust governance for the DxF should include a governing board to foster statewide data stewardship, a requirement to sign the Data Sharing Agreement (DSA) as a condition of contracting with state agencies, and clear statutory authority granted to CDII to oversee and implement the DxF, investigate violations, and continue to refine the DSA. Active governance is also required to oversee the development and management of a statewide person index that contemplates authentication and use by individuals. The centralized roster service should be viewed as a collective public-private asset that requires effective governance to establish shared accountability, transparency, provenance, and most importantly, to uphold privacy and security to maintain trust. In addition, governance will play an important role in standards management including advocating, tracking, aligning, and communicating updates to consumers and DxF Participants.

To enhance the utility and completeness of the service, we recommend that all DxF Participants should be required to contribute to the development of a statewide person index, and recognize there should be a clear distinction with optional use for participating organizations. 

Given the immediate need for a roster management solution, it is critical that we prioritize the development of a centralized roster service as a scalable reference model. Connecting for Better Health’s DxF Community Sandbox and Design Studio could be leveraged for real-world testing and use case development to model different approaches for a statewide person index and a Record Locator Service, grounded in current capabilities shaped by the existing health information exchange landscape.  

We appreciate the opportunity to provide these comments to CDII and commend the initiative to address roster sharing and management issues to expand health and social service data sharing under the DxF. Should you have any questions, please reach out to Stephanie Thornton at Connecting for Better Health at stephanie@connectingforbetterhealth.com

Sincerely,

Connecting for Better Health

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