C4BH Hosts Discussion on Consent Management and Whole-Person Care–and DSA P&Ps Review

Whole-person care is a priority in California, where the goal is the coordination of health, behavioral health, and social services in a patient-centered way through mindful use of resources. The state has sponsored a series of pilot programs that support state Medicaid beneficiaries who continue to experience poor health outcomes. 

Key to the success of such programs is the ability to target populations, share data between systems, coordinate care in real time, and evaluate individual and population-based progress, according to the California Department of Health Care Services (DHCS).

Daniel Stein from the Stewards of Change Institute joined the January 26 Connecting for Better Health (C4BH) coalition meeting to discuss the work that the National Interoperability Collaborative (NIC) is doing to improve data sharing and interoperability, which supports whole-person care initiatives.

Stewards of Change Institute is a nonprofit think tank, advocacy, and implementation organization. Along with AcademyHealth, Stewards of Change leads NIC. A nonprofit, AcademyHealth is a leading professional organization dedicated to advancing the fields of health services research and health policy.

Stein highlighted the centrality of obtaining consent from the individuals whose information is to be shared as part of interoperability. A priority for his organization is training individuals and organizations on how to accomplish interoperability from a systems perspective.

Of particular interest to NIC, said Stein, is focusing on disseminating information among middle management and throughout organizations. The result of this effort is a training program called InterOptimability, a systems-level training approach for accomplishing multi-domain, cross-program information sharing remotely and/or in person.

NIC developed a toolkit that has been used in New York for the Administration for Children and Families (ACF). During the meeting, Stein discussed use cases for specific applications of confidentiality and privacy according to state and federal law. 

ACF is a division of the U.S. Department of Health & Human Services (HHS) that promotes the economic and social well-being of families, children, youth, individuals, and communities with funding, strategic partnerships, guidance, training, and technical assistance.

At the meeting, C4BH’s Timi Leslie stressed the benefits of developing a similar toolkit in California. 

Stein explained that NIC’s approach puts individual consumers at the center, while considering  the systems and programs individuals navigate as silos that surround them. This model considers the ways that historically separate systems can interact with each other in a way that supports whole-person care, according to Stein. 

Following Stein’s presentation, Andrea Frey of Hooper Lundy & Bookman shared with the coalition highlights from the most recent draft of the Data Sharing Agreement (DSA) Policies and Procedures (P&Ps)

Frey explained that four new policies were proposed, and one existing policy was amended. That’s in addition to the existing eight policies that the California Health and Human Services Agency (CalHHS) Center for Data Insights and Innovation (CDII) released and finalized in July 2022.

Key takeaways about the updated P&Ps are as follows:

  1. California information blocking prohibitions, which align with federal requirements in addition to denial and preventing harm exceptions.  
  2. Technical requirements for exchange, which require hospitals to notify participants with admission, discharge, and transfer (ADT) requests when health and social services information (HSSI) is created and available electronically. 
  3. Real-time exchange, which means that participants must respond to HSSI queries without delay; in addition, ADT notifications must be shared at the time of the event. 
  4. Early exchange, which requires that those who want to engage in early exchange of HSSI can sign the DSA and share data after verifying that recipients are also signed participants of the exchange.
  5. Privacy and security standards, which require that any member who receives HSSI in error to destroy it securely and as quickly as possible. They must also notify the participant who shared the unauthorized information. 

There was an initial concern among meeting attendees about qualified health information organizations’ (QHIOs) ability to manage the subsequent increases in ADT notifications. Dan Chavez, executive director of Serving Communities Health Information Organization (formerly Santa Cruz HIO), responded that this is the whole premise upon which health information exchanges were founded. The ADT obligation should be expanded to include more ambulatory settings, particularly emergency departments, added Chavez. 

Coalition members reaffirmed this sentiment and remained confident that QHIOs are well-positioned to help California realize the vision of patient-centered data exchange. 


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