Building Data Infrastructure to Support Patient-Centered Outcomes Research (PCOR)
Since 2013, the Office of the National Coordinator for Health Information Technology (ONC) has led or collaborated on 10 projects that inform policy, standards, and services specific to the adoption and implementation of a patient-centered outcomes research (PCOR) data infrastructure.
These projects are funded through the Patient-Centered Outcomes Research Trust Fund (PCORTF), created under the Patient Protection and Affordable Care Act of 2010 and managed by the Assistant Secretary for Planning and Evaluation (ASPE).
Current ONC PCOR Projects
Using Machine Learning Techniques to Enable Health Information Exchange to Support COVID-19-Focused PCOR
This project will create a foundation to use electronic health data from HIEs for PCOR by implementing data standards, APIs, and privacy-preserving machine learning (ML) infrastructure. This project began in 2021 and is ongoing.
Synthetic Health Data Generation to Accelerate PCOR
This project will enhance the ability of software to produce high-quality synthetic data for opioid, pediatric, and complex care use cases. This project began in 2019 and is ongoing.
Training Data for Machine Learning to Enhance PCOR Data Infrastructure
This project will conduct foundational work to support future applications of machine learning and artificial intelligence (AI) to health, healthcare, and PCOR. This project began in 2019 and is ongoing.
Completed ONC PCOR Projects
Common Data Model Harmonization
This project developed mappings to support harmonization and advance the interoperability of the data within four common data models (CDMs): Sentinel, PCORnet, Observational Health Data Sciences and Informatics, and Informatics for Integrating Biology and the Bedside. This project ended in 2019.
Coordinated Registry Network for Women’s Health Technologies
This project developed and tested a standards-based approach to establishing a coordinated registry network (CRN) that is focused on women’s health technologies, including tools to facilitate data collection within registries. This project ended in 2019.
Data Access Framework
This project published standards that facilitate the ability to access and extract data from within an organization’s health information technology (IT) systems, from an external organization’s health IT systems, or from health IT systems across multiple organizations. This project ended in 2017.
Patient-Generated Health Data
This project identified best practices, gaps, and opportunities for progress in the collection and use of patient-generated health data (PGHD) for research and care delivery. This project ended in 2018.
Patient Matching, Aggregating, and Linking
This project addressed some of the obstacles of linking patient data across research, claims, and clinical data sets. This project ended in 2019.
Patient-Reported Outcomes through Health IT
This project developed and tested the standardized integration of structured patient-reported outcomes (PROs) data in EHRs and other health IT solutions to support interoperable exchange of this information. This project ended in 2019.
Privacy and Security Framework for PCOR
This project developed tools and resources to address the complex privacy- and security-related legal and policy considerations that arise when using electronic health data for PCOR. This project ended in 2019.
Structured Data Capture
This project published standards that enable an electronic health record (EHR) system to retrieve, display, and fill a structured form or template, and store or submit the completed form. This project ended in 2016.