Skip to main content
Patient-Centered Outcomes Research Institute
Patient-Centered Outcomes Research Institute
  • Blog
  • Newsroom
  • Find It Fast
  • Help Center
  • Subscribe
  • Careers
  • Contact Us

PCORI

Patient-Centered Outcomes Research Institute

Search form

  • About Us
    Close mega-menu

    About Us

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

    Fact Sheets: Learn More About PCORI

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

    Find It Fast

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

    Subscribe to PCORI Email Alerts

    Sign up for weekly emails to stay current on the latest results of our funded projects, and more.

  • Research & Results
    Close mega-menu

    Research & Results

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

    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.

  • Topics
    Close mega-menu

    Topics

    • Addressing Disparities
    • Arthritis
    • Asthma
    • Cancer
    • Cardiovascular Disease
    • Children's Health
    • Community Health Workers
    • COVID-19
    • Dementia and Cognitive Impairment
    • Diabetes
    • Kidney Disease
    • Medicaid
    • Men's Health
    • Mental and Behavioral Health
    • Minority Mental Health
    • Multiple Chronic Conditions
    • Multiple Sclerosis
    • Obesity
    • Older Adults' Health
    • Pain Care and Opioids
    • Rare Diseases
    • Rural Health
    • Shared Decision Making
    • Telehealth
    • Transitional Care
    • Veterans Health
    • Women's Health

    Featured Topic: Women's Health

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

  • Engagement
    Close mega-menu

    Engagement

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

    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.

  • Funding Opportunities
    Close mega-menu

    Funding Opportunities

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

    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.

  • Meetings & Events
    Close mega-menu

    Meetings & Events

    • Upcoming
    • Past Events

    January 2021 Board of Governors Meeting

    The Board approved funding for a new research study relating to kidney health and a new funding allocation for PCORnet. Learn more

    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.

You are here

  • Research & Results
  • Explore Our Portfolio
  • Expanding Capacity of Patient Advocat...

Expanding Capacity of Patient Advocates to Support PCOR in Breast Cancer

Project Summary  

Background: One in eight women will develop breast cancer in her lifetime. It is estimated that, in 2018, more than 3 million women were living with a history of breast cancer in the United States, and that 266,120 new cases of breast cancer were diagnosed in women and 2,550 in men. Worse yet, it was estimated that 40,920 women and 480 men in the United States would die from the disease in 2018.

Fortunately, the medical community’s understanding of the biological and genetic processes involved in breast cancer has improved over the last several decades, which has led to an explosion of research into the value and effectiveness of a number of new diagnostics and treatments. As a result, patients increasingly face many difficult risk/benefit trade-offs when considering their options. The importance of patient-centered outcomes research (PCOR) and trained advocates to inform this research is greater than ever before.

Proposed Solution to the Problem: A flagship NBCC program since 1995, the Project LEAD Institute is a free, rigorous science course for lay advocates on the language and concepts critical to understanding breast cancer research. Annually, this program empowers 50-60 new breast cancer advocates, equipping them with the skills and confidence needed to participate in breast cancer research—from grant review, to trial design, to dissemination of key results. NBCC also hosts a yearly summit and ongoing virtual training on key topics.

As a new addition to the training and programing that NBCC makes available to breast cancer research advocates, for this project, NBCC proposes to expand the capacity of its virtual training to create a structured Learning Network offering trainings specifically on breast cancer-related PCOR and comparative effectiveness research (CER) approaches and methodologies. The program will be available to 2,000+ breast cancer advocates and dozens more who will participate over the next two years.

Objectives: NBCC’s objective is to build the capacity of its ongoing training for existing and future Project LEAD graduates by creating a comprehensive and structured PCOR/CER Learning Network that will enhance advocates’ skills and knowledge around PCOR/CER in breast cancer, and advocates’ critical role in informing this research.

Activities: Guided by the results of a needs assessment conducted in September 2018, of former Project LEAD graduates, NBCC has identified a host of training activities desired by advocates that will be used to shape the structure and delivery of ongoing training through the Project LEAD Learning Network. NBCC will develop a four-part quarterly webinar series (presented by live webinar and online in enduring form) specifically focused on PCOR/CER issues in breast cancer research.

Outcomes and Outputs (projected): NBCC will develop an evaluation plan with a mix of qualitative and quantitative measures to assess the short- and long-term impact of NBCC PCOR/CER training on advocate activities in the field of breast cancer-related PCOR. Data will be derived from interviews and surveys of participating advocates. A key outcome of this project will be to strengthen advocates’ understanding of and meaningful participation in breast cancer-related PCOR/CER across the country.

Patient and Stakeholder Engagement Plan: An advocate committee will help inform the curriculum development activities, moderate and facilitate Learning Network activities, and help promote the trainings.

More on this Project  

Project Resource: Clinical Trials Presentation

Project Details

Project Status
Awarded; In progress
Project Lead
Michelle Tregear, PhD, MA
Project Period
24 months
Organization
National Breast Cancer Coalition
Year Awarded
2019
State
District of Columbia
Project Type
Engagement Award Project
Project Budget
$246,880
Page Last Updated: 
January 10, 2020

Research & Results

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

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

January 21
Cycle 1 2021 Broad PFA Applicant Town Hall
February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021

PCORI

Footer contact address

Patient-Centered Outcomes
Research Institute

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

Subscribe to Newsletter

Twitter Facebook LinkedIn Vimeo

© 2011-2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.

Privacy Policy | Terms of Use | Trademark Usage Guidelines | Credits | Help Center