Building Data Infrastructure to Support Patient Centered Outcomes Research (PCOR)
The Patient Protection and Affordable Care Act of 2010 created the Patient-Centered Outcomes Research Trust Fund (PCORTF).
The PCORTF is used both by the Patient-Centered Outcomes Research Institute (PCORI) and the Department of Health and Human Services (HHS) to fund specific initiatives that allow patients, providers and caregivers to use data to make more informed healthcare decisions .
The Office of the Secretary (OS) of the U.S. Department of Health and Human Services (HHS) receives 4% of the PCORTF to build data capacity for PCOR.
The Secretary of HHS has delegated authority to the Office of the Assistant Secretary for Planning and Evaluation (ASPE) to manage these funds, which involves interagency collaborations across HHS agencies to include the Office of the National Coordinator (ONC).
The PCOR data infrastructure is designed 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
The Office of the National Coordinator for Health Information Technology (ONC), in partnership with ASPE, has five active PCORTF funded projects that support the development and testing of a PCOR data infrastructure.
- Structured Data Capture (SDC)
- Data Access Framework (DAF)
- Patient-Generated Health Data (PGHD)
- Patient Matching, Aggregating and Linking (PMAL)
- Privacy and Security Framework for PCOR (PSP)
The first two projects, Structured Data Capture and Data Access Framework (DAF), have been active ONC Standards & Interoperability Initiatives since 2013. The other three projects were kicked off in 2015.
We envision outcomes of these five projects to inform policy, standards, and services specific to the adoption and implementation of a PCOR data infrastructure.