The Office of National Coordinator (ONC) for Health Information Technology led the development of “National Health IT Priorities for Research: A Policy and Development Agenda,” which articulates a vision where research can happen more quickly and effectively.
Despite the progress of accelerated use of health IT and exponential growth in the amount and availability of health data, certain research and scientific breakthroughs may remain slow due to difficulties with health IT infrastructure and the lack of high-quality health data. ONC led a review of relevant literature and programs, key interviews, and a workshop to identify electronic health data and health IT infrastructure gaps. Workshop attendees included representatives from federal agencies, technology vendors, researchers, and other stakeholders.
ONC staff presented early versions of the Agenda at two American Medical Informatics Association conferences to further refine the content. Supportive of both Goal 3 and Goal 4 in the updated Federal Health IT Strategic Plan (2020-2025), the Agenda has two specific goals aimed at modernizing our nation’s health IT infrastructure to enable research and discovery:
Goal 1: Leveraging High-Quality Electronic Health Data for Research Priority
1: Improve Data Quality at the Point of Capture Priority
2: Increase Data Harmonization to Enable Research Uses Priority
3: Improve Access to Interoperable Electronic Health Data
Goal 2: Advancing a Health IT Infrastructure to Support Research Priority
4: Improve Services for Efficient Data Storage and Discovery Priority
5: Integrate Emerging Health and Health-Related Data Sources Priority
6: Improve Methods and Tools to Support Data Aggregation Priority
7: Develop Tools and Functions to Support Research Priority
8: Leverage Health IT Systems to Increase Education and Participation Priority
9: Accelerate Integration of Knowledge at the Point of Care
The Agenda proposes strategies for each of the nine priorities. These strategies include a set of calls to action that must be advanced to achieve the vision set forth in the Agenda. The strategies and actions are intended to address relevant data, tools, or infrastructure needs over the next three to five years.
ONC has launched a variety of initiatives and activities to address the Agenda’s nine priorities, working in collaboration with other federal agencies. For example, ONC has partnered with the National Institutes of Health’s (NIH) All of Us Research Program to accelerate precision medicine, including advancing standardized data sharing. And ONC’s Leading Edge Acceleration Projects (LEAP) in Health IT seek to overcome obstacles to well-designed, interoperable health IT supporting research and patient care. To achieve the goals in the Agenda, ONC collaborates with the National Institutes of Health, the Food and Drug Administration, and the Veterans Health Administration on these initiatives – along with private sector stakeholders.
