Fast-Tracking Health Data Standards Development and Adoption in Real-World Settings: A Pilot Approach.

BACKGROUND: Pilot-testing is important in standards development because it facilitates agile navigation of the gap between needs for and use of standards in real-world settings and can reveal the practicalities of implementation. As the implementation and use of health data standards are usually more complicated than anticipated, the Office of the National Coordinator for Health Information Technology (ONC) routinely oversees and organizes relevant pilot projects. OBJECTIVES: This article provides an in-depth look into a sample of ONC's standards-focused pilot projects to (1) inform readers of the complexities of developing, implementing, and advancing standards and (2) guide those seeking to evaluate new standards through pilot projects. METHODS: The ONC's approach to conducting pilot projects begins with identifying a clinical care need, research requirement, or policy outcome that is not well supported by existing standards through a landscape review. ONC then selects a testing approach based on the identified need and maturity of relevant standards. Next, ONC identifies use cases and sites to pilot-test the relevant standard. Once complete, ONC publishes a report that informs subsequent projects and standards development. RESULTS: Pilot projects presented here are organized into three categories related to their demonstrated focus and related approach: (1) improving standards for presenting and sharing clinical genetic data, (2) accelerating the development and implementation of new standards, and (3) facilitating clinical data reuse. Each project illustrates the pilot approach from inception to next steps, capturing the role of collaboration among standards development organizations, stakeholders, and end-users to ensure standards are practical and fit for purpose. CONCLUSION: The ONC approach identifies implementation difficulties prior to broader adoption and use of standards, and provides insight into the steps needed to scale use of standards. The ONC's organization of pilot projects serves as a natural accelerator for building communities of practice, often providing a well-connected beneficiary of lessons learned.

Meeting the challenge: Health information technology's essential role in achieving precision medicine.

Precision medicine can revolutionize health care by tailoring treatments to individual patient needs. Advancing precision medicine requires evidence development through research that combines needed data, including clinical data, at an unprecedented scale. Widespread adoption of health information technology (IT) has made digital clinical data broadly available. These data and information systems must evolve to support precision medicine research and delivery. Specifically, relevant health IT data, infrastructure, clinical integration, and policy needs must be addressed. This article outlines those needs and describes work the Office of the National Coordinator for Health Information Technology is leading to improve health IT through pilot projects and standards and policy development. The Office of the National Coordinator for Health Information Technology will build on these efforts and continue to coordinate with other key stakeholders to achieve the vision of precision medicine. Advancement of precision medicine will require ongoing, collaborative health IT policy and technical initiatives that advance discovery and transform healthcare delivery.

The national health information technology human factors and ergonomics agenda.

Health information technology (IT) implementation has encompassed much of the United States health care system over the past decade, and user frustration with health IT has steadily increased. Human factors and ergonomics (HFE) methods and approaches can improve the design, implementation, and use of health IT for clinicians and consumers. To better understand the effect of federal HFE in health IT research funding, the authors conducted a review of several key, specific initiatives. The review focused on the goals and accomplishments of these initiatives. Findings to date show that HFE is improving the usefulness of health IT, but additional research and new methods are needed. Corresponding research funding and policy priorities are identified. New HFE work and innovative approaches are needed to capitalize on HFE knowledge, principles, and methods to improve the design, implementation, and use of health IT at a broader scale.

Leveraging the health information technology infrastructure to advance federal research priorities.

Ensuring that federally funded health research keeps pace with the explosion of health data depends on better information technology (IT), access to high-quality electronic health data, and supportive policies. Because it prominently funds and conducts health research, the U.S. federal government needs health IT to rapidly evolve and has the ability to drive that evolution. The Office of the National Coordinator for Health Information Technology developed the National Health IT Priorities for Research: A Policy and Development Agenda (the Agenda) that identifies health IT priorities for research in consultation with relevant federal agencies. This article describes support for the Agenda from the Food and Drug Administration, the National Institutes of Health, and the Veterans Health Administration. Advancing the Agenda will benefit these agencies and support their missions as well as the entire ecosystem leveraging the health IT infrastructure or using data from health IT systems for research.

Investing in health information infrastructure: can it help achieve health reform?

Health care reform has reemerged as a policy imperative. Congressional discussions regarding sizable federal investments in health information technology (IT) infrastructure have revitalized the vision of health IT as a critical component of accelerating improvements in the quality and value of health care for all Americans. Policymakers will be challenged to link investments in the health information infrastructure to the objectives of health care reform. The purpose of this paper is to articulate some near- and long-term steps that increase the likelihood of achieving high-value health care with the aid of health IT.