Consent is a core infrastructure need to enable data exchange. As California’s Data Exchange Framework and other federal initiatives invest in information sharing between health and social services for care coordination & management purposes, it is especially important to leverage technology and data standards to implement consent. 

On January 17, 2024, Connecting for Better Health partnered with Stewards of Change Institute and the California Health Care Foundation to close out the Advancing Consent Management in California webinar series with a discussion around the technical components that can enable consent.

During this fourth and final webinar, panelists explored updates to the technology and data standards landscape as well as how California can utilize HL7 FHIR data standards to achieve granular consent. The panel of experts included: 

• Stephen Konya, Senior Advisor, Office of the National Coordinator of Health IT 
• Kathryn Miller, Chief Operating Officer, Bronx Regional Health Information Organization 
• Mark Savage, JD, Managing Director, Savage & Savage Consulting, LLC
• Dr. Mohammad Jafari, PhD, independent subject matter expert 

Here are the key takeaways and explorations discussed during the live event: 

• It’s important to focus on the implementation of granular consent. Dr. Jafari explained the nuances of data segmentation and consent, specifically to support enforcement and management. The discussion centered on leveraging data segmentation for implementing granular consent preferences, covering use cases for privacy and protecting sensitive data like reproductive health and substance use treatment information. Challenges to implementing granular consent include identifying different classes of sensitive data and enforcement of rules and an individual’s preferences.  
• Fast Healthcare Interoperability Resources (FHIR) can be a resource through multiple dimensions. There are currently multiple initiatives developing guidance for how FHIR can be utilized for different purposes, such as to support clinical trials and health payers with FHIR-based exchange. Savage highlighted the consent profile within the Gravity Project’s SDOH Clinical Care FHIR Implementation Guide as one reference profile. He explained that while the current consent profile does not perform data segmentation or tagging, it could be a starting point for testing the exchange of consent information with social determinants of health (SDOH) data. He also flagged that a new permission resource in FHIR could also have a role in expressing overarching policies in a uniform way, helping to cover all authorization policies consistently within the FHIR ecosystem.
• New York’s health exchange environment and approach could serve as a model for California. Miller delivered insights on New York’s opt-in organization-specific consent model, where data can flow to approved providers with patient consent. She previewed upcoming plans to implement a statewide consent form that would establish patients consenting to access of their information in New York’s health information exchange for any current and future treating provider, health plan, or community-based organization delivering services to the patient. She also shared that New York state recently released a Request for Applications (RFA) to develop social care networks, where granular consent will be vital to support information exchange for care coordination. 
• Federal efforts are focused on alignment, but recognize that different states need different types of solutions. The group reflected that consent collection and implementation is complex. It requires audit practices and the need for solutions that accommodate varying technical infrastructures, particularly given the evolving landscape. What works in one state may not necessarily be applicable in another. Konya shared that the U.S. Department of Health and Human Services (HHS) is facilitating ongoing efforts at both federal and state levels, and is aiming for alignment and coordination rather than duplication to progress information exchange through implementation of consent practices. 

View the webinar recording here.

Resources from the webinar panelists are also available here.