On February 24, the Office of the National Coordinator for Health IT (ONC) released its “National Health IT Priorities for Research: A Policy and Development Agenda.” ONC officials said that “The Agenda articulates a vision of a health IT infrastructure that supports alignment between the clinical and research ecosystems. This has been the result of an effort to understand the state of the use of health IT and data from health IT systems for research, gaps that need to be addressed, and thinking through a path forward to enabling discovery using health IT.”
As presented on the ONC’s website, the agency noted that “The Agenda was developed in collaboration with relevant stakeholders and outlines nine priorities, including concrete steps stakeholders can take to achieve that vision and enable research to happen more quickly and effectively. The Office of the National Coordinator for Health Information Technology (ONC) led the development of National Health IT Priorities for Research: A Policy and Development Agenda, which articulates a vision of a health IT infrastructure that supports alignment between the clinical and research ecosystems. The Agenda, developed in collaboration with federal partners and with input from stakeholders, outlines nine priorities, including concrete steps that stakeholders can take to achieve that vision and enable research to happen more quickly and effectively.”
Further, the agency noted, “The Agenda is based on findings from a literature review, interviews with experts, and an in-person stakeholder workshop. ONC staff presented early versions of the Agenda during panel discussions at two American Medical Informatics Association conferences and used attendee feedback to refine the goals and priorities.”
The Agenda has two overarching goals with nine associated priority areas, as outlined in the full document of the announcement.
The document states that:
“The Agenda describes priority areas that require action to address gaps in the health IT infrastructure and realize the outlined vision. The Agenda has two overarching goals: (1) to leverage high-quality electronic health data for research, and (2) to advance a health IT infrastructure to support research. The goals and their associated priority areas are described below.
Priorities related to leveraging high-quality electronic health data for research include:
Priority 1: Improve Data Quality at the Point of Capture
– Health data are not always captured in standard formats or with the corresponding metadata needed to ensure the integrity and fidelity of the data. Individual data points need to be captured seamlessly, completely, accurately, consistently, and in a standardized format to improve the use of electronic health data for research.
Priority 2: Increase Data Harmonization to Enable Research Uses
– For health data to be used efficiently for research, they must be extracted and aggregated in a seamless manner that allows for harmonization across different organizations and also to be available for reuse for future research inquires, in accordance with established privacy and security safeguards.
Priority 3: Improve Access to Interoperable Electronic Health Data
– In addition to being captured in standard formats, data must be accessible through standardized extraction and transmission mechanisms available to all authorized users within the infrastructure. This includes the availability of reference documentation necessary to support identification and extraction of the specific data needed to answer the research question.
Priorities related to advancing a health IT infrastructure to support research include:
Priority 4: Improve Services for Efficient Data Storage and Discovery – Research data are often inaccessible due to localized storage. Supporting standards that ensure data are both interoperable and identifiable will allow access to data in new ways, increasing the breadth of information available for research. In addition, centralized solutions to data storage may be needed to encourage those who have collected data for research purposes to maintain and make the data available for future research.
Priority 5: Integrate Emerging Health and Health-Related Data Sources
– Integrating data collected outside of the care delivery process that may affect health outcomes—such as social determinants of health, patient-generated health data, and environmental exposures—is critical to improving clinical care and research. Work is needed to support receiving, processing, and integrating external health-related data streams into health IT systems in a standardized way, as appropriate.
Priority 6: Improve Methods and Tools to Support Data Aggregation
– Advanced data functions are needed to improve the ability to aggregate data across various sources in both the clinical and research ecosystems. These include functions to effectively and efficiently support matching and linking data, honor data use agreements (DUAs), identify redundant data, manage updates to data and metadata, and work with varying data formats.
Priority 7: Develop Tools and Functions to Support Research
– Tools are needed to more efficiently search, index, and query systems to identify patient cohorts or extract data about research participants. Additional functionality could be developed to more efficiently randomize participants to treatment and control groups in a trial. Tools that support robust de-identification and use of de-identified datasets to increase confidence in security and manage risk are also needed. Patient-centered consent tools that allow patients to control and update their data-sharing preferences if embedded into the health IT infrastructure could facilitate research participation and data sharing.
Priority 8: Leverage Health IT Systems to Increase Education and Participation
– Patients and their providers may lack clear incentives to participate in or encourage participation in research. Tools and interfaces embedded within health IT systems could be used to more effectively recruit and enroll participants by providing educational materials regarding research participation and providing information back to individuals who participate in research to increase interaction and sustained engagement.
– The health IT infrastructure should reduce barriers to participating in research to ensure inclusion and representation of all populations. Partnerships between institutions that have developed the infrastructure and tools needed to enable research participation and institutions that lack these resources may enable broader representation of diverse patient populations in research.
Priority 9: Accelerate Integration of Knowledge at the Point of Care
– Advanced methods and solutions are needed to support aggregation of research findings within the health IT infrastructure. As these systems improve, they can be used to accelerate the rigorous but lengthy process used to integrate evidence at the point of care.”
