Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is a United States-based non-profit institute created through the 2010 Patient Protection and Affordable Care Act. It is a government-sponsored organization charged with investigating the relative effectiveness of various medical treatments. Medicare considers the Institute's research in determining what sorts of therapies it will cover, although the institute’s authorizing legislation set certain limits on uses of the research by federal health agencies.[2]

Patient-Centered Outcomes Research Institute
TypeNonprofit organization
Legal status501(c)(1) organization
Executive Director
Joe V. Selby
Board of Governors
Grayson Norquist
(Chairperson)
Revenue (2018)
US$506,485,458
DisbursementsUS$2.41 billion[1]:5
(2010–2018)
US$308 million[1]:9
(2018)
Websitepcori.org

Funding

PCORI is funded through the Patient-Centered Outcomes Research Trust Fund (PCORTF), which was authorized by the United States Congress as part of the Patient Protection and Affordable Care Act of 2010.[3] Its annual income comes from the general fund of the Treasury and a small fee assessed on Medicare, private health insurance, and self-insured plans. The act mandates a $2 fee, adjusted for inflation, for each person covered on a group plan.[4][5] In 2018, its revenue was $506,485,458 dollars with approved research awards of $308,000,000.[1]

Funding from PCORI enabled the development of PCORnet, a collaboration of several research networks using health data collected in the course of care through electronic health records, claims data, and patient registries.[6]

Research

PCORI funds research studies that focus on patient-centered outcomes, rather than only on comparative effectiveness research (CER) alone.[7][8][2] Patient-centered outcomes research involves questions and outcomes which are "meaningful and important to patients and caregivers"[9] in order to help those individuals make informed decisions for their own care. As of 2019, there have been 65 research standards developed to support patient-centered outcomes research.[10] PCORI's authorizing legislation requires it "to guarantee peer review of all research results and to make those results publicly accessible within 90 days of their receipt."[11]

PCORnet

PCORnet is a research network initiated by PCORI funding. It consist of several research networks. It established and maintains a common data model that allows analysis across many sites. People-Centered Research Foundation is running the central office for the network.[12]

References
  1. PCORI. "2018 Annual Report: Patient-Centered Outcomes Research Institute" (PDF). Retrieved July 17, 2019.
  2. "Social Security Act §1182". Social Security Agency. Retrieved April 13, 2014.
  3. "Patient Centered Outcomes Research Trust Fund Fee: Questions and Answers | Internal Revenue Service". www.irs.gov. Retrieved August 7, 2019.
  4. Pipes, Sally. "Obamacare Increases Large Employers' Health Costs". Forbes. May 19, 2014.
  5. "PCORI Fee Is Due by July 31 for Self-Insured Health Plans". SHRM. July 2, 2019. Retrieved September 4, 2019.
  6. Fleurence, R. L.; Curtis, L. H.; Califf, R. M.; Platt, R.; Selby, J. V.; Brown, J. S. (July 1, 2014). "Launching PCORnet, a national patient-centered clinical research network". Journal of the American Medical Informatics Association. 21 (4): 578–82. doi:10.1136/amiajnl-2014-002747. ISSN 1067-5027. PMC 4078292. PMID 24821743.
  7. Methodology Committee of the Patient-Centered Outcomes Research Institute (PCORI) (April 18, 2012). "Methodological Standards and Patient-Centeredness in Comparative Effectiveness Research: The PCORI Perspective". JAMA. 307 (15): 1636–40. doi:10.1001/jama.2012.466. ISSN 0098-7484. PMID 22511692.
  8. Neumann, Peter J; Weinstein, Milton C. (2010). "Legislating against use of cost-effectiveness information". New England Journal of Medicine. 363 (16): 1495–1497. doi:10.1056/NEJMp1007168. PMID 20942664.
  9. Frank, Lori; Basch, Ethan; Selby, Joe V. (October 15, 2014). "The PCORI Perspective on Patient-Centered Outcomes Research". JAMA. 312 (15): 1513–4. doi:10.1001/jama.2014.11100. ISSN 0098-7484. PMID 25167382.
  10. "PCORI Methodology Standards". www.pcori.org. November 12, 2015. Retrieved July 26, 2019.
  11. Broitman, Marina; Sox, Harold C.; Slutsky, Jean (April 16, 2019). "A Model for Public Access to Trustworthy and Comprehensive Reporting of Research". JAMA. 321 (15): 1453. doi:10.1001/jama.2019.2807. ISSN 0098-7484. PMID 30920580.
  12. "People-Centered Research Foundation: About".

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