December 24, 2024
Re: Administration for Children and Families Development of Interoperability Standards for Human Service Programs
Dear Mr. Duvall,
On behalf of Connecting for Better Health, thank you for the opportunity to respond to the Request for Information “Administration for Children and Families Development of Interoperability Standards for Human Service Programs.” We are greatly supportive of the Administration for Children and Families (ACF)’s endeavor to improve the quality of service delivery and increase efficiency in collaborations through the use of interoperable data standards.
Connecting for Better Health (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.
Please see below for responses in regard to two RFI questions informed by our experience and expertise in California:
1.4 Describe any mitigation strategies or policy levers that have effectively moved interoperable human services data exchange forward in your organization, state, or program
In 2021, California’s legislature enacted a statewide mandate for the secure electronic exchange of health and social services information (Assembly Bill 133). This landmark legislation seeks to enable meaningful data exchange and achieve better health outcomes for all Californians. The mandate has motivated providers, hospitals, payers, laboratories, and other partners to share data in ways they have not in the past. Notably, community-based organizations such as food banks and homeless shelters are now increasingly engaged as important social health data exchange stakeholders. A key missing ingredient, as the RFI notes, is the interoperability standards that guide this type of meaningful exchange.
In 2023, largely in response to organizations’ concerns about a lack of specificity and know-how to engage in the types of exchange this mandate enables, C4BH launched the Data Exchange Framework (DxF) Community Sandbox. C4BH recognizes that much of health and social data sharing success depends on achieving the final mile: ensuring that information made available through data exchange is high-quality and actionable by balancing standardization with current capabilities. The DxF Community Sandbox is a critical service that offers a simulated test environment where organizations can readily identify, test, and validate data sharing strategies. Lessons learned can then be shared among peers, data sharing intermediaries and other stakeholders including policy makers, and regulators.
6.3 Are there tools in use for normalizing and/or harmonizing data to standards?
The DxF Community Sandbox is both a technology platform and use case development process. As such it allows community-based organizations and social service organizations to pursue cutting-edge data sharing approaches with meaningful cross-sector collaboration.
One important aspect of the DxF Community Sandbox is the statewide DxF participant directory which captures user information and enables visualizations critical to facilitating data sharing among partners. In particular, the visualization tool enables users to create sub-networks of just their data sharing partners by organization type, location, geographical areas served, supported exchange patterns, interoperability standards, and transport methods. Once registered, users can claim their unique test-node where they can upload non-PHI data which other users can access for testing and validation purposes.
Data sharing initiatives are often time consuming and resource intensive and have a high risk of yielding minimal value, particularly for resource constrained agencies. The DxF Community Sandbox offers a new and innovative paradigm: a reduced risk and safe environment mirroring health data sharing in the real-world that not only unlocks the benefits of data sharing, but also illuminates potential technical, policy, and regulatory challenges.
DxF Community Sandbox users are already seeing results and appreciate the ability to have a birds eye view of statewide data sharing capabilities. A recent user recently described their experience: “I really enjoyed and felt inspired by the potential of the impact of our data sharing program. The Community Sandbox is a benefit to us all. It allows us to ‘take a pulse’ on requirements, policy, and practice to implement and improve data connectivity in support of California’s Medicaid transformation.”
We appreciate the opportunity to provide these comments to ACF and commend the work to promote interoperability between health and human service programs in alignment with the HHS Data Strategy. 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
