Health information technology (health IT) has played an evolving role in the U.S. health care system—from early documentation of medical records to the standardization and sharing of those records to capturing broad swaths of data on patient care. Health IT gained greater prominence in 2004, when President Bush established the Office of the National Coordinator for Health Information Technology (ONC) and created the position of a National Health Information Technology Coordinator through an Executive Order. Both were codified in 2009 through the Health Information Technology for Economic and Clinical Health (HITECH) Act, part of the American Recovery and Reinvestment Act.
ONC is “the principal federal entity charged with coordination of nationwide efforts to implement and use the most advanced health IT and the electronic exchange of health information.” Its mission is to improve the health and well-being of individuals and communities through the use of technology and health information that is accessible when and where it matters most.
On June 1, 2022, three members of the ONC team— Ryan Argentieri, MBA, Deputy Director, Office of Technology; Elisabeth Myers, MBA, Deputy Director, Office of Policy; and Kiri Bagley, MD, MPH, AAAS Science & Technology Fellow—presented to the Society for Women’s Health Research Policy Advisory Council about how ONC’s work is contributing to the advancement of women’s health, where they see areas of opportunity moving forward, and how stakeholders can engage with ONC throughout the year.
Some of the high-level programs and initiatives on which ONC is focusing its attention include the following:
- USCDI+. An extension of the U.S. Core Data for Interoperability (USCDI) initiative, which established a baseline for the data elements required to be accessible through certified EHR technology, USCDI+ was created to support the identification and establishment of domain- or program-specific datasets, supporting ONC’s federal partners “who have a need to establish, harmonize, and advance the use of interoperable data sets that extend beyond the core data in the USCDI in order to meet agency-specific programmatic requirements.” The USCDI+ initiative began with a focus on the domain of public health quality, where stakeholders have engaged to identify needs ranging from record linkages and laboratory interoperability to how to improve defining which data elements need to be communicated from the clinical setting to the operation setting for situational awareness purposes. Ms. Argentieri said that maternal health has also been named as a priority and potential area of opportunity for this initiative.
- Access “Without Special Requirements” Fast Healthcare Interoperability Resources (FHIR) Application Programming Interface (API). FHIR is an interoperability standard that is designed to enable health data, including clinical and administrative data, to be quickly and efficiently exchanged. As the ONC team describes it, APIs and apps are what make it easy for users to check their bank accounts or order delivery meals through a smartphone, and they are working to extend that same experience to patients and providers across the health care system. For women, this could help reduce situations when they go into a doctor’s office and are questioned about their medical history; providers wouldn’t be in a position to disregard their history because their health records will be living in one place and accessible to them. ONC is hoping to make meaningful progress in this space by the end of the year, when all certified technology developers are required to deploy standard FHIR API across their customer base, which will create a climate for innovation as apps that will work across all EHR systems can be developed.
- 21st Century Cures Act: Beyond the 21st Century Cures Act’s broad-sweeping interoperability directives, the legislation also had a requirement for ONC to look at pediatric care and pediatric health IT specifically. Through that investigation, ONC found that the ability to link maternal and child health care information was severely lacking in both directions. That lack in data linkage has caused gaps in our understanding of the health of the child and the health of the mother. Moving forward, as ONC considers resources to build pediatric health IT, the Office is considering how to link maternal and child health information, ensure maternity-related care coordination with primary care and specialty care, and provide other helpful health-related information.
- Trusted Exchange Framework and Common Agreement (TEFCA). Another priority ONC is hoping to address from the 21st Century Cures Act is the issue of whole person health care. Currently, certain barriers like privacy and security issues prohibit the flow of data between data points. The TEFCA, which is a policy framework with goals of establishing uniform policy and a technical floor for nationwide interoperability and simplifying connectivity, could address some of those issues so that when a patient is moving from practice to practice or specialty to specialty—or when information is moving from one setting to another—their health care data can move with them and enable individuals to gather their health care information.
Over the course of the conversation, the team at ONC identified several areas of need and opportunity within women’s health and maternal health related to health IT. These include the importance of information linkage and longevity (e.g., connecting maternity information, family history/hereditary information, and between various health care providers and institutions); accessibility in information exchange (e.g., mitigating funding and expenses required for linking all of the information, accessibility to the technical infrastructure required for interoperability); and health equity (e.g., addressing the disparities in maternal health care, access, and outcomes, a need for education about equity concerns and bias that exists within the health care system, and a need for care coordination among health care providers seeing the same patient).
In terms of ways to engage with ONC, the team recommended joining ONC’s various Listening Sessions and engaging with the Office’s federal advisory committee, the Health Information Technology Advisory Committee (HITAC). The HITAC is the committee HHS uses to review health IT standards and the committee that sets HHS’s for interoperability and standards use cases. That committee holds monthly meetings and includes a public comment section, which ONC commented was an important outlet for engagement. The team also expressed interest in having “deep dives” and one-on-one conversations on USCDI+ with groups and associations to understand how they’re approaching public health, quality, and health equity data.
To learn more about ONC and its work, please visit https://www.healthit.gov/.