In 2010, Congress recognized the need to improve the quality and relevance of evidence available to help patients and their caregivers, clinicians, payers, and policymakers make better-informed healthcare decisions. Through the Patient Protection and Affordable Care Act, the Patient-Centered Outcomes Research Trust Fund (PCORTF) was established to expand comparative effectiveness research through patient-centered outcomes research (PCOR). These studies look into the effectiveness of different prevention, diagnostic, and treatment options with consideration of the preferences, values, and questions patients face when making health care choices. In return, the conduct of PCOR increases patient involvement in their care by providing them an opportunity to evaluate the quality, outcomes, and effectiveness of health care treatments and intervention – especially in areas where there is poor evidence.
Each year, funds are dispersed according to the following formula: 80% for Patient-Centered Outcomes Research Institute (PCORI) to support the conduct comparative effectiveness research, 16% for AHRQ to ensure PCOR findings are known, understood, and used, and the remainder 4% for the Department of Health and Human Services to support data infrastructure.
Recognizing that the challenges remain in using the wealth of data generated by the health system to support patient-centered research, Congress allocates 4% of the PCOR Trust Fund to the Office of the Secretary (OS) to build data capacity for PCOR with the specific charge of:
“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.”
(Section 937(f) of the Public Health Service Act)
Since its inception in 2011, OS-PCORTF has supported a portfolio of cross-agency projects addressing the five functionalities identified as foundation blocks in building a robust PCOR data infrastructure: 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, and use of enhanced publicly-funded data systems. By building data capacity around the identified areas, rigorous studies can be conducted using electronic data to better understand the safety and effectiveness of interventions used in health care across different patient populations.