By a vote of 392-26 in the House of Representatives and 94-5 in the Senate, Congress passed the 21st Century Cures Act and directed that interoperability and patient access are national priorities for electronic health information exchange and better health, better care and better value. We suspect that, if they had been voting too, the entire nation would have voted to prioritize interoperability and electronic access to their health information in equally overwhelming numbers. A landmark nationwide survey on how consumers value and use health IT found that only 10 percent of U.S. adults would do nothing with electronic access to their health information, and only 15 percent would do nothing with their downloaded digital health information.(1)

The Office of the National Coordinator for Health Information Technology (ONC) is now leading efforts to implement the 21st Century Cures Act’s provisions on interoperability. Section 4003 directs ONC to develop a trusted exchange framework and common agreement within one year. For the past eight years and more, the National Coordinators and ONC have been exercising critical leadership to convene the nation’s stakeholders and move the nation from static paper-based medical-record systems to a dynamic electronic learning health system that connects all critical settings and determinants of a person’s health and care, not just the 15-minute office visit.

As part of three recent education and listening sessions, ONC requested public comment on some key issues. We appreciate that ONC seeks comments on

    Standardization,
    Transparency,
    Cooperation and Non-Discrimination,
    Security and Patient Safety,
    Access, and
    Data-Driven Choice.

At UCSF and its Center for Digital Health Innovation, we are also driven to meet real world needs—to build technology platforms and ecosystems that power digital health innovations and connect clinical data with dispersed patient-consumer data and synthesize them with powerful analytics to revolutionize health care nationwide. That is why UCSF’s Center for Digital Health Innovation’s comments begin with four core use cases we believe should guide and ground ONC’s important work:

    1. Individuals’ and patients’ electronic access to their health information,
    2. Patient- or person-generated health data,
    3. Shared care planning and shared care and information coordination, and
    4. Social and environmental determinants of health.

These are real-world use cases that interoperability and the trusted exchange framework must address and integrate to meet the 21st Century Cures Act’s national priorities. To these, we add some cross-cutting principles or themes that we think must inform the interoperability and exchange framework.

You can find our comments in this PDF. We welcome comments, questions and collaboration.

Mark Savage
Director, Health Policy
Center for Digital Health Innovation
University of California, San Francisco

(1) National Partnership for Women & Families, Engaging Patients and Families: How Consumers Value and Use Health IT, pp. 30-32 (Dec. 2014), available at http://www.nationalpartnership.org/research-library/health-care/HIT/engaging-patients-and-families.pdf.