In 2010, the Patient Protection and Affordable Care Act (ACA) catalyzed efforts to expand and strengthen patient-centered outcomes research (PCOR) by establishing the Patient-Centered Outcomes Research Trust Fund (PCORTF). The establishment of the PCORTF reflected the critical need for better scientific evidence to inform decisions of patients, clinicians, and policymakers about the effectiveness of treatments, services, and other health care interventions on the full range of outcomes. In December 2019, Congress reauthorized the PCORTF through 2029.
Amounts transferred from the PCORTF support the work of three organizations. The Patient-Centered Outcomes Research Institute (PCORI) receives 80% of the funding to conduct clinical comparative effectiveness research (CER). The Agency for Healthcare Research and Quality (AHRQ) receives 16% of the funding to disseminate findings from PCOR studies, incorporate evidence into clinical practice, and train researchers in patient-centered outcomes research.
Lastly, as specified in Section 937(f) of the Public Health Service Act, the HHS Office of the Secretary receives 4% of the PCORTF to build data capacity:
“The Secretary shall provide for the coordination of relevant Federal health programs to build data capacity for comparative clinical effectiveness research, including the development and use of clinical registries and health outcomes research networks, in order to develop and maintain a comprehensive, interoperable data network to collect, link, and analyze data on outcomes and effectiveness from multiple sources including electronic health records.”
Since 2011, the OS-PCORTF has supported a portfolio of multi-agency data projects and other collaborative efforts to build the robust data capacity integral to the success of patient-centered outcomes research. These efforts include strengthening core infrastructure functionalities critical to ensuring that PCOR studies provide valid and reliable evidence for decision making about the effectiveness and outcomes of interventions across diverse patient groups and settings of care:
- Standardized collection of standardized clinical data
- Collection of participant-provided information
- Linking of clinical and other data for research
- Use of clinical data for research
- Use of enhanced publicly-funded data systems for research
Expanding data capacity for PCOR studies and strengthening these infrastructure functionalities improves the quality and efficiency of PCOR studies, resulting in better, more timely evidence for more informed decisions.