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

  • Blog
  • Formulating Our Approach to New Prior...

Formulating Our Approach to New Priority Research Areas

Date: 
September 8, 2020
Blog Topics: 
Executive Director's Blogs,
Funding Awards,
Research

As part of last winter’s legislation that reauthorized PCORI’s funding for 10 years, Congress included two new research priority areas for PCORI to address: strategies for improving maternal mortality, and improving health for individuals with intellectual and/or developmental disabilities (IDD).

Nakela L. Cook, MD, MPH
Executive Director

These areas are of critical importance for PCORI given the long-standing health challenges faced by those affected and the opportunities that PCORI’s approach to research done differently can contribute to meaningful health improvements. We are committed to a multipronged approach to funding research to address a variety of issues related to these two topics over the next decade.

Addressing Maternal Morbidity and Mortality

The United States consistently ranks near the bottom among high-income countries on measures of maternal morbidity and mortality. Sadly, about 700 women die each year in the United States as a result of pregnancy or delivery complications. Additionally, severe maternal morbidity—unexpected outcomes of labor and delivery that result in significant short- or long-term consequences to a woman’s health—has been steadily increasing in recent years.

The burden of morbidity and mortality is highest for Black women, and the disparities for them continue to widen over time and are being exacerbated by a global pandemic. Non-Hispanic Black women are three to four times more likely than white women to die from pregnancy-related causes, and the preterm birth rate among Black women is nearly 50 percent higher than the rate among other women. In addition to Black women, disparities in maternal morbidity and mortality persist among American Indians and Asian Americans. Other factors, including socioeconomic status, age, and living in a rural setting also impact maternal morbidity and mortality.

In preliminary engagement with patients and stakeholders, we have heard the importance of addressing morbidity and mortality across a range of conditions from preconception through postpartum. We have heard evidence needs for both long-term comparative effectiveness research (CER) and short-term evidence synthesis amid a global pandemic to help address these disparities.

We continue to listen to stakeholders about the unique challenges and sensitivities around engaging communities of color and those most burdened by poor maternal health outcomes in health research. We are also listening to often-overlooked communities with risk factors relevant to childbearing, such as veterans and sexual and gender minorities.

Improving Care for Individuals with Intellectual and/or Developmental Disabilities

According to the Centers for Disease Control and Prevention, one in six American children has one or more developmental disabilities. Developmental disabilities are chronic and begin either at birth or during the developmental period, and they cause physical, learning, language, and/or behavioral impairments. Intellectual disabilities, a type of developmental disability, involve limitations to cognitive function—such as learning, reasoning, and problem solving—and adaptive behavior. Not all developmental disabilities include limitations in cognitive ability.

People with IDD often have special healthcare needs. This issue is particularly critical for adolescents with IDD as they transition from pediatric to adult-oriented healthcare settings with fewer support systems, including care planning and coordination.

Twitter Icon for Tweet This Content In legislation reauthorizing PCORI's funding for another decade, Congress provided two areas of interest to pursue: intellectual and developmental disabilities and maternal mortality. Learn more. https://pcori.me/3bBp5fc CLICK TO TWEET

Compared to other patients with special healthcare needs, individuals with IDD are less likely to report adequate support of their transition, and to direct their own care or receive the supports needed to do so, and more likely to incompletely transition to adult care. Individuals with incomplete transitions are less likely to receive routine care, tests, and vaccinations, and are more likely to have unmet physical and mental health and prescription needs. Simply put, incomplete or faulty transitions in care can lead to a lifetime of health disparities.

Although evidence-based interventions to support transitional care are in use for other populations and conditions, research is needed to determine which care models and services are optimal and could be readily implemented for individuals with IDD.

Unsurprisingly, as with so many health conditions, people of color with IDD are subject to even greater health disparities compared to their peers from other groups. As part of PCORI’s interest in addressing healthcare disparities, we welcome studies of interventions that target vulnerable populations.

2020 PCORI Virtual Annual Meeting Breakout Sessions

The annual meeting included these two related sessions. Log in with your existing registration email address or register for free to watch.

PCORI Virtual Annual Meeting 2020 -- Accelerating Impact on Care and Patient-Centered Outcomes | September 16-17, 2020 | #PCORI2020

  • Exploring Comparative Effectiveness Research Needs in Intellectual and Developmental Disabilities: A Conversation
  • Increasing Access to Perinatal Mental Health Care: Multiple Approaches to Improve Outcomes

Watch Now

Ways to Get Involved

The Cycle 3 2020 Broad PCORI Funding Announcement (PFA), which opened for Letters of Intent September 1, offers up to $30 million in funding for CER in each of these priority topics. I should note that we are emphasizing these priority areas to encourage submissions to them, not to limit submissions to these topics only.

Under this Broad PFA, we seek to fund studies for maternal morbidity and mortality that compare the effectiveness of multilevel, culturally adapted interventions to address barriers in access to and continuity of optimal patient-centered maternal care. To address healthcare needs of people with IDD, we seek proposals for CER of models of care to support the healthcare transition from childhood to adulthood, and the continuation of patient-centered primary and specialty health care for individuals with IDD. That is just part of the evidence gap PCORI hopes to fill as we will continue to solicit and fund additional research in these topic areas in the coming years.

These special areas of interest are embedded within a variety of other funding announcements, as well. The funding announcement for Phased Large Awards for Comparative Effectiveness Research, our new initiative to fund bold, large-scale, phased CER projects that is currently accepting Letters of Intent invites proposals for research on maternal morbidity and mortality and IDD, and the Eugene Washington PCORI Engagement Awards opportunities for capacity building and stakeholder convening support invites applications on these topics as well.

At our upcoming Virtual Annual Meeting September 16 and 17, two breakout sessions—Exploring CER Needs in Intellectual and Developmental Disabilities: A Conversation, and Increasing Access to Perinatal Mental Health Care: Multiple Approaches to Improve Outcomes—offer opportunities for engagement and collaboration on what we can do together to improve health outcomes in these two areas. The Annual Meeting is free and open to anyone, and I hope many of you can join us.

Finally, directing more resources to maternal morbidity and mortality and IDD research will be top of mind as we begin our forward-looking re-examination of our National Research Priorities this fall.

I must emphasize that these initiatives are only the beginning of our work to answer important questions in each of these priority areas—a task we look forward to exploring with stakeholders and the broader research community in the coming years. I look forward to working with you along the way.

Add new comment

The content of this field is kept private and will not be shown publicly.

More information about text formats

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Author(s): 

Nakela L. Cook, MD, MPH

Executive Director
Office of the Executive DirectorExecutive Team

Topics

Executive Director's Blogs
Funding Awards
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

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

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