What is PCORI?

PCORI — the Patient-Centered Outcomes Research Institute– is an independent, non-profit, nongovernmental organization authorized by the “Patient Protection and Affordable Care Act of 2010 (ACA)” to study how different medications and treatments compare, so patients and their caregivers have the information they need to choose the health care and treatment options that are best for them.

When will PCORI’s authorization expire?

PCORI is authorized through September 30, 2019. At that point, PCORI will no longer have the authority to commit to new research grants, and only previously-awarded grants will continue to be funded through FY2024.

What is PCORI’s purpose?

PCORI’s mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions. PCORI funds comparative clinical effectiveness research, or CER, as well as supports work that will improve the methods and infrastructure used to conduct such studies.

What is PCORI’s governance structure?

PCORI and its activities are governed by an independent, 21-member board of governors that represents the entire health care community and includes the director of the Agency for Healthcare Research and Quality (AHRQ) and the director of the National Institutes of Health (NIH).The members are appointed by the U.S. Comptroller General of the Government Accountability Organization (GAO).

How is PCORI funded?

PCORI is supported by the Patient-Centered Outcomes Research Trust Fund (PCOR Trust Fund) of which 80 percent is provided to PCORI to support its research funding and operations and 20 percent is provided to AHRQ and the Assistant Secretary for Planning and Evaluation (ASPE) to disseminate CER research findings and build data capacity for PCOR, respectively. The PCOR Trust Fund receives income each year from three funding streams: appropriations from the general fund of the Treasury, transfers from the Medicare Part A and Part B trust funds, and a fee assessed on private insurance and self-insured health plans (the PCOR fee).

How much money has PCORI provided in grants?

As of December 2018, PCORI has awarded more than $2.4 billion in grants to more than 600 research-related projects. This includes $1.54 billion to support patient-centered studies comparing two or more healthcare options, and another $124 million for research to improve the science and methods of CER. $325 million has been invested to develop PCORnet®, the National Patient-Centered Clinical Research Network, a resource for conducting faster, more-efficient health research by harnessing data representing 100 million patients and partnerships among hundreds of patients, clinicians, and healthcare organizations.

What are PCORI’s areas of focus?

PCORI has a robust portfolio of patient-centered outcomes research that addresses a variety of high-priority conditions and topics, including:

  • Addressing Disparities
  • Cancer
  • Cardiovascular Disease
  • Community Health Workers
  • Dementia and Cognitive Impairment
  • Diabetes
  • Kidney Disease
  • Mental and Behavioral Health
  • Multiple Chronic Conditions
  • Multiple Sclerosis
  • Obesity
  • Older Adults’ Health
  • Pain Care and Opioids
  • Rare Diseases
  • Shared Decision Making
  • Telehealth
  • Transitional Care

How does PCORI set its priorities for research?

PCORI is uniquely a stakeholder-driven research institute and was established to answer the questions important to patients and stakeholders. PCORI is guided by its National Priorities and Research Agenda, which was developed through an extensive process with significant input from stakeholders that include:

  • Assessment of prevention, diagnosis and treatment options
  • Improving healthcare systems
  • Addressing disparities
  • Communication and dissemination research
  • Accelerating patient-centered outcomes research and methodological research

What is PCORI’s impact?

PCORI’s impact lies in its funded research that offers patients and caregivers the information they need to make better-informed healthcare decisions. Since PCORI began funding research in 2012, a growing number of funded studies are being reported in leading medical journals. Research highlights can be found at https://www.pcori.org/sites/default/files/PCORI-Highlights-of-PCORI-Funded-Research-Results-Fact-Sheet.pdf.

How is PCORI-funded research different from NIH or AHRQ or FDA?

PCORI’s research is unique and complementary to NIH (discovery), AHRQ (health services research), and FDA (safety and efficacy). PCORI is the only research organization dedicated to funding studies comparing which care approach works best, for whom, and under which circumstances. Also, PCORI is the only research funder guided by input from patients. To ensure that studies produce useful information, PCORI requires that contracted researchers engage patients and other stakeholders throughout the entirety of the research process.

How is PCORI different from ICER?

The Institute for Clinical and Economic Review (ICER) is an independent and non-partisan research organization that evaluates the cost-effectiveness of prescription drugs, medical tests, and other health care and health care delivery innovations using a methodology assessing the cost per quality-adjusted-life-year (QALY) or similar metric. Per statute, PCORI cannot “develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended.” Instead, PCORI factors into its research priorities the burden of a condition and thereby is authorized to fund comparative clinical effectiveness research for conditions that lead to high costs to the individual or to society.

What is PCORNet?

In 2014, PCORI invested more than $250 million in the development of PCORnet: The National Patient-Centered Clinical Research Network. PCORnet is a large, highly representative, national “network of networks” that collects data routinely gathered in a variety of healthcare settings, including hospitals, doctors’ offices, and community clinics.The goal of PCORnet is to significantly reduce the time and effort required to start studies and build the necessary research infrastructure to conduct them. PCORnet has launched over 20 studies and was featured in over 70 publications in scientific journals.

PCORnet is comprised of a Coordinating Center and partner networks—13 Clinical Data Research Networks (CDRNs), based in healthcare systems such as hospitals, integrated delivery systems, and federally qualified health centers, 20 Patient-Powered Research Networks (PPRNs), operated and governed by groups of patients and their partners, and 2 Health Plan Research Networks (HPRNs), actively engaged in partnering to link claims data with electronic health record data.

In 2017, the PCORI Board of Governors provided infrastructure-building funds to support the long-term sustainability of PCORnet through a newly incorporated People-Centered Research Foundation (PCRF), a nonprofit formed by PCORnet investigators to advance and support the network’s sustainability. PCRF research will be sponsored by a mix of support from government, foundations, and industry. All projects will be aligned with the foundation’s mission of centering projects on the needs of people and their health.