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 eight projects that inform policy, standards, and services specific to the adoption and implementation of a patient-centered outcomes research (PCOR) data infrastructure.  Funded through the Patient-Centered Outcomes Research Trust Fund (PCORTF) created under the Patient Protection and Affordable Care Act of 2010 and that is managed by the Assistant Secretary for Planning and Evaluation (ASPE), the goal of these projects is to engage patients in healthcare decision-making and incorporate their responses into research through an integrated electronic environment that continuously supports evolving and emerging demands for health information and adapts to novel and promising technologies.

ONC PCOR Projects

  • Structured Data Capture (SDC): this project has published Integrating the Healthcare Enterprise (IHE) and Health Level Seven International (HL7®)-based 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 in an external system or repository. This project began in 2013 and ended in 2016.
  • Data Access Framework (DAF): this project has published IHE and HL7-based standards that facilitate the ability to access and extract data from within an organization’s health IT systems, from an external organization’s health IT systems, or from health IT systems across multiple organizations. This project began in 2013 and ended in 2017.
  • Patient-Generated Health Data (PGHD): this project identified best practices, gaps, and opportunities for progress in the collection and use of PGHD for research and care delivery. This project began in 2015 and is still ongoing.
  • Patient Matching, Aggregating, and Linking (PMAL): this project pursues a multi-faceted approach to addressing the obstacles of linking patient data across research, claims, and clinical data sets to support the PCOR data infrastructure that enables standardization and sharing of patient data access across organizations. This project began in 2015 and is still ongoing.
  • Privacy and Security Framework for PCOR (PSP): this project developed a legal and ethical framework and corresponding technical and operational architecture to address the many privacy and security-related legal and policy issues that affect use of data for PCOR. This project began in 2015 and is still ongoing.
  • Coordinated Registry Network (CRN) for Women’s Health Technologies: this project began in 2017 and will establish a standards-based CRN using three clinical registries focused on women’s health. The project will also develop the tools to facilitate collection of data within these registries so that the data can be reused to answer additional questions through the addition of new data elements and patient cohorts.
  • Common Data Model Harmonization (CDM): this project began in 2017 and will harmonize several existing CDMs from Sentinel, PCORnet, OHDSI, and i2b2 to further advance the utility and interoperability of the data within these networks for use in PCOR.
  • Patient-Reported Outcomes through Health IT (PRO): this project began in 2017 and will standardize the integration of structured PRO data in EHRs and other health IT solutions to support interoperable exchange of this information.
  • (NEW) Synthetic Health Data Generation to Accelerate PCOR: this project begins in 2019 and will enhance the ability of software to produce high-quality synthetic data for opioid, pediatric, and complex care use cases.
  • (NEW) Training Data for Machine Learning to Enhance PCOR Data Infrastructure: this project begins in 2019 and will focus on foundational work to support future applications of machine learning and AI to health, healthcare, and PCOR.

Please contact Stephanie Garcia with questions about the ONC PCOR Portfolio.

Content last reviewed on October 29, 2019
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