The Precision Medicine Initiative (PMI), launched in 2015, is a nationwide initiative to move away from the “one-size-fits-all” approach to health care delivery and to instead tailor treatment and prevention strategies to people’s unique characteristics, including environment, lifestyle, and biology.
Federal agencies and health care organizations advance the Precision Medicine Initiative by collaborating on projects in support of tailored medicine.
ONC's Role in PMI
- Accelerate innovative collaboration around pilots and testing of standards that support health IT interoperability for research
- Adopt policies and standards to support privacy and security of cohort participant data
- Advance standards that support a participant-driven approach to patient data contribution
ONC's Precision Medicine Initiative Activities
- Sync for Science:
Collaboration between industry and federal government resulted in a pilot that allows individuals to access their health data and send it to researchers in support of the All of Us Research Program and precision medicine.
- Sync for Genes Phase 2 – Integrating Genomic Data:
Launched in Fall 2017, Phase 2 intends to focus on expanding the profile work from Phase 1 (see below) to support the integration of genomics information and clinical information at the point-of-care.
- Sync for Science API Privacy and Security:
Led an independent privacy and security technical and administrative testing, analysis, and assessment of a voluntary subset of S4S pilot organizations’ implementations of the S4S API. Read to learn more about some key privacy and security considerations for healthcare APIs, informed by project activities.
- Precision Medicine Initiative Data Security Principles Implementation Guide:
The guide was developed to provide best practices in security and data management for precision medicine for organizations participating in the program or working with its data.
- Sync for Genes Phase 1 - Standardizing Genomic Data:
- Phase 1 focused on updating the Health Level 7 (HL7®) Fast Healthcare Interoperability Resource (FHIR®) clinical genomic profile and genomic specifications. Read the final report: Enabling Clinical Genomics for Precision Medicine via HL7® Fast Healthcare Interoperability Resources®
Health IT Buzz Blog
Read Health IT Buzz Blog posts related to precision medicine:
- These Genes are on FHIR! Advances in Standardizing Genomics through HL7® FHIR®
- The Precision Medicine Era is Dawning
- NIH and ONC Launch the Sync for Science (S4S) Pilot: Enabling Individual Health Data Access and Donation
- Highlighting a Way to Advance Interoperability and Reduce Costs for Lab Tests
- “You Never Want to Go Back”: The Promise of Health IT
ONC PCOR Projects
ONC, in collaboration with multiple HHS agencies, has led a series of key projects that collectively develop policy, standards, and services necessary to expand the data infrastructure for patient-centered outcomes research. This work, funded by the Patient-Centered Outcomes Research Trust Fund (PCORTF), supports precision medicine by ensuring patient decisions are incorporated into research and care recommendations that best align with patient needs. Read more on PCOR.
Other Federal Government PMI Programs
- All of Us Research Program:
The National Institutes of Health (NIH) leads this historic effort to gather data from one million or more people living in the United States to accelerate research and improve health through the delivery of precision medicine.
precisionFDA is an online, cloud-based, portal that will allow scientists from industry, academia, government and other partners to come together to foster innovation and develop the science behind a method of “reading” DNA known as next-generation sequencing (or NGS). Blog post on precisionFDA.