Each Wonks’ Corner, a member of Blue Shield’s government affairs team dives into a current policy topic. See our previous Wonks’ Corner blogs here.

From accelerating demand for electronic health record systems to mandating use of modern data exchange standards, the federal government is a key driver of data sharing in health care.  Each Administration leaves a unique fingerprint on the health care system through the health information technology (IT) policy it pursues.  For the Obama Administration, health care digitization was a top priority.  Under the Trump Administration, transparency and accessibility of health information were core objectives. 

So what imprint will the Biden Administration leave on data sharing in health care?

From my perspective, the Biden Administration’s key health IT policies are working on two fronts: first, to raise the floor and expand the reach of data sharing; and second, to enable the use of data to address health equity.  Here are a two examples of the Administration’s ongoing work in support of these goals:

  • Expanding the baseline of standardized, interoperable data: This year, the Biden Administration proposed adopting an updated version of a data content standard known as the United States Core Data for Interoperability or USCDI. USCDI is the core set of standardized data categories and elements that health plans and health care providers’ electronic health record systems are required to support.  This effectively make the USCDI data set the common floor or foundation for interoperable data in our health care system.  In support of the Administration’s goals to promote health equity, the updated version of USCDI includes new data elements related to sexual orientation, gender identity, and disability status as well as elements to track social determinants of health.
     
  • Building a “network of networks” to support nationwide data exchange: In 2016, Congress authorized work to establish a standardized legal agreement and technical approach for exchanging data across Health Information Networks.  This work, called the Trusted Exchange Framework and Common Agreement or TEFCA, is intended to create the infrastructure that supports a more efficient, expansive, and common approach to exchanging data nationwide. The Biden Administration has made operationalizing TEFCA a top priority, and this year announced the initial set of foundational networks that will connect to each other and facilitate data exchange transactions. While this effort is slow moving, we expect to see progress on data being exchanged under the TEFCA framework in 2024.

While supportive of the Administration’s efforts, we continue to advocate for bolder action by federal policymakers to accelerate progress toward an open, digital ecosystem that enables secure, real-time exchange of electronic health information.  We are calling on Congress and the Biden Administration to advance a Digital Health Bill of Rights to establish that:

  • Health information belongs to the patient. It is not the proprietary commodity of health system entities.
     
  • Patients have the right to access their own comprehensive, digital health record that is updated in real time or not later than within 24 hours of new health information being available and includes data from all relevant sources, e.g., pharmacy, lab, claims.
     
  • Health care entities must participate in enabling a patient’s comprehensive, digital health record by:
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    • Collecting and recording health information electronically using widely available standards to support data integration;
    • Sharing all that information with the patient’s payor (or designated entity for uninsured) in real-time or not more than 24 hours after the information is available; and
    • (Payors) Creating, sharing in a usable digital form, and updating comprehensive digital health records with patients and their designated treating providers in real-time or not more than 24 hours after the information is available.

A Digital Health Bill of Rights would not only put patients first but create an urgency for action on data sharing across our health care system.