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PCORI

Patient-Centered Outcomes Research Institute

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    Fact Sheets: Learn More About PCORI

    Download fact sheets about out work, the research we fund, and our programs and initiatives.

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    Browse through an alphabetical list of frequently accessed and searched terms for information and resources.

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    Research & Results

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    Evidence Updates from PCORI-Funded Studies

    These updates capture highlights of findings from systematic reviews and our funded research studies.

    Journal Articles About Our Funded Research

    Browse through a collection of journal publications that provides insights into PCORI-funded work.

    Explore Our Portfolio of Funded Projects

    Find out about projects based on the health conditions they focus on, the state they are in, and if they have results.

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    Topics

    • Addressing Disparities
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    Featured Topic: Women's Health

    Learn more about the projects we support on conditions that specifically or more often affect women.

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    Engagement

    • The Value of Engagement
    • Engagement in Health Research Literature Explorer
    • Influencing the Culture of Research
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    Engagement Tools and Resources for Research

    This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research.

    Explore Engagement in Health Literature

    This tool enables searching for published articles about engagement in health research.

    Research Fundamentals: A New On-Demand Training

    It enables those new to health research or patient-centered research to learn more about the research process.

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    Funding Opportunities

    • What & Who We Fund
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    PCORI Funding Opportunities

    View and learn about the newly opened funding announcements and the upcoming PFAs in 2021.

    Tips for Submitting a Responsive LOI

    Find out what PCORI looks for in a letter of intent (LOI) along with other helpful tips.

    PCORI Awardee Resources

    These resources can help awardees in complying with the terms and conditions of their contract.

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    Meetings & Events

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    • Past Events

    PCORI Webinar: February 2, 2pm ET

    Hear from PCORI leaders about ways to get involved in PCOR, improvements to our funding opportunities, and more. Register

    Confronting COVID-19: A Webinar Series

    Learn more about the series and access recordings and summary reports of all six sessions.

    2020 PCORI Annual Meeting

    Watch recordings of all sessions, and view titles and descriptions of the posters presented at the virtual meeting.

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  • Engagement
  • Influencing the Culture of Research

Influencing the Culture of Research

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PCORI's approach to comparative clinical effectiveness research (CER) considers patients’ and other healthcare stakeholders’ needs and preferences, focusing on outcomes most important to them. This patient-centered, stakeholder-driven approach not only shapes the research that PCORI funds, but also influences changes in the culture of healthcare research more broadly. Here are some specific examples.

FDA Models Advisory Committee after PCORI Panel
A multi-ethnic group in a discussion with a health expert

PCORI is credited as part of the inspiration for a Patient Engagement Advisory Committee at the Food and Drug Administration (FDA) Center for Devices and Radiological Health. The creation of this FDA committee was informed by PCORI’s Patient Engagement Advisory Panel and the PCORI Engagement Rubric, which serves as a framework for stakeholder input on PCORI decision making.

PCORI's Rubric Influences the Centers for Medicare and Medicaid Services
A man flipping pages of a magazine

The Centers for Medicare and Medicaid Services (CMS) used the PCORI Engagement Rubric to guide its efforts to partner with patients to develop quality measures. The CMS Quality Measure Development Plan states, "Recent best practices identified for partnering with patients and caregivers include: adopting principles from the (PCORI) person-family engagement framework..."

Interaction with PCORI Inspires Creation of Pediatric CER Center
A young girl playing with the stethoscope hanging around the neck of a male doctor, both of them smiling.

PCORI inspired Debra Fiser, the former dean of the College of Medicine at the University of Arkansas for Medical Sciences, to establish a center for patient-centered pediatric CER in 2014. It recruits and mentors early-career faculty. "When I discovered PCORI’s approach to funding patient-centered CER, I used that as a catalyst to convince the medical school to invest in a training center," Fiser said.

Leveraging PCORnet®

PCORnet, The National Patient-Centered Clinical Data Research Network, provides infrastructure that enables the conduct of large and unique studies, including those supported by other funders. For example, a large NIH-funded trial, the PREVENTABLE study, is recruiting from 40 healthcare systems in seven PCORnet Clinical Research Networks to answer important questions about dementia prevention.

Because of the large size of this study, we may identify subgroups of older adults most likely to benefit from taking statins to prevent dementia, disability, or cardiovascular disease… the large, diverse study population will also enable us to better evaluate unwanted effects of statins that may put some at risk or reduce their quality of life.

Susan Zieman, MD, PhD
Medical Officer, Division of Geriatrics and Clinical Gerontology, National Institute on Aging

Patient and Other Stakeholder Engagement in Research

Influenced by PCORI, Geisinger Health System developed a strategic vision for patient engagement in research. Geisinger has adopted a framework for patient and family engagement in discovery, as well as in care. It has also established a standing advisory group on patient and family engagement.

The Henry Ford Health System Patient Engagement Research Center (PERC) credits PCORI with serving as a model for patient engagement. The center supports patient-centered outcomes research at the health system and improves the way it delivers care. "PCORI’s support, resources, and guidance have been key to PERC’s success," said Karen Kippen, PERC’s Executive Director.

PCORI inspired the American Heart Association to pilot the Citizen Scientist Think Tank, which fosters patient engagement in the design of research on heart disease and stroke.

Researcher Training in Community Engagement

The Meharry-Vanderbilt Alliance credits PCORI with catalyzing its developing two new programs to train doctoral students and postdoctoral research fellows in community engagement in research. Said the Alliance’s Executive Director Consuelo Wilkins, "The motivation of researchers because of PCORI funding has been a big stimulus for the work that we do.… The availability of PCORI funding and the interest was a catalyst for us to be able to expand our reach."

PCORI motivated new opportunities at the University of Texas Health Science Center at San Antonio. The university created one-year Clinical Investigator Kickstart awards to fund meaningful engagement with partners to increase knowledge about and skills in research engagement.

The University of Pittsburgh and University of Pittsburgh Medical Center credit PCORI with being central to establishing their Comparative Effectiveness Research Center (CERC). The center developed courses based on The PCORI Methodology Standards and emphasizes stakeholder engagement. Said Monica Costlow, CERC project director, "These are new concepts for some of our researchers—PCORI is making them think about the stakeholders."

As PCORI has evolved, the notion of patient engagement has changed dramatically, and the AHA has sought more ways we can make the patient the focal point.

Marko Mijic
Government Relations Manager, American Heart Association (AHA)

Patient and Other Stakeholder Review for Funding Decisions

PCORI inspired the addition of patient reviewers and new review criteria for grant programs at multiple institutions, such as the Vanderbilt University Medical Center, the Ontario Ministry of Health and Long-Term Care, and the Michigan Institute for Clinical and Health Research. "With the addition of [a] PCORI [ambassador] to our cabinet, we have really been trying to be more connected to patients and others in the community and community organizations," said Kate Althouse, the institute’s program manager.

PCORI has had a significant influence on the Patient Engagement Research Center, which was created to support patient-centered outcomes research at Henry Ford Health System.

Patient and Stakeholder Partner Support

PCORI inspired multiple institutions, including the University of Texas Health Science Center at San Antonio and the University of Arkansas for Medical Science, to develop policies and programs to make engagement easier. Examples include new policies to permit hiring patient or stakeholder partners as study staff and other capacity-building services.

Methodology Standards in Research

The Association of University Radiologists' Radiology Research Alliance Task Force on patient-centered outcomes research reviewed all PCORI-funded radiology projects and described how the The PCORI Methodology Standards apply to medical imaging. The task force identified opportunities for future projects in the field and developed a national agenda for patient-centered outcomes research.

The PCORI Methodology Standards have also shaped courses at several institutions, including Harvard University’s T.H. Chan School of Public Health, University of Pennsylvania’s Perelman School of Medicine, and an AHRQ-funded training at the University of Pittsburgh, Expanding National Capacity in PCOR through Training, designed for minority-serving institutions.

Academic Journals on Healthcare Research

In an interview on becoming editor in chief of the American Journal of Kidney Diseases, Harold Feldman highlighted major studies related to nephrology that PCORI is funding. He said the journal would focus on translating findings from patient-centered outcomes research into clinical practice.

PCORI work inspired SLEEP, the journal of the Sleep Research Society, and the Journal of Clinical Sleep Medicine to require authors to use people-centered language in their publications.

PCORI has made overt what was actually true all along: That meaningful medical research is by definition a collaborative effort.

Board members
SLEEP, the journal of the Sleep Research Society

Other Examples of PCORI's Influence on Health Research?

Are you aware of other examples of PCORI's influence on any aspect of health research? We invite you to share any examples you have observed in your own work or that of others. Email us at [email protected].

PCORI's Goals and Strategic Plan

These examples of influencing the culture of research are one of three goals outlined in our strategic plan.

Learn more about PCORI's Goals and PCORI's Strategic Plan.

View Highlights of PCORI-Funded Research Results

Posted: February 12, 2018; Updated: May 1, 2020

About Us

  • Our Programs
  • Governance
  • Financials and Reports
  • Procurement Opportunities
  • Our Staff
  • Our Vision & Mission
  • Contact Us

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
  • Engagement in Health Research Literature Explorer
  • Influencing the Culture of Research
  • Engagement Awards
  • Engagement Resources
  • Engage with Us

Funding Opportunities

  • What & Who We Fund
  • What You Need to Know to Apply
  • Applicant Training
  • Merit Review
  • Awardee Resources
  • Help Center

Meetings & Events

February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021
February 11
Advisory Panel on Patient Engagement Winter 2021 Meeting

PCORI

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Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

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