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
  • Guiding Research and Policy to Improv...

Guiding Research and Policy to Improve Healthcare for Everyone

Date: 
October 10, 2014
Blog Topics: 
Engagement Blogs,
Guest Blogs

To mark our fourth anniversary, we invited representatives of our key stakeholder communities to describe the influence that PCORI has had on their work and their perspectives on clinical research. In this post, a caregiver and patient talks about how she got involved in her local health system, than state policy, and recently a national health network that is part of PCORnet. The views expressed are those of the author and not necessarily those of PCORI.


In the aftermath of Hurricane Katrina, my husband and I ended up in a high school in Portland, Oregon, both in poor health, with no health insurance, and $7.49 between us. There we received so much care and attention—and everything we needed to restart our lives. In return, I’ve sought opportunities to contribute to our community, especially to make healthcare better for everyone. I’ve had a variety of experiences, leading from my own medical provider to a State of Oregon advisory committee to PCORnet, PCORI’s national patient-centered clinical research network.

My starting point was a note posted in the lobby of a medical center where my husband and I received care. Oregon Health and Science University (OHSU) Family Medicine at Richmond was looking for patient members for its Board of Directors. Previously, I had been employed in civil service, so I joined that board—and then more and more people got in touch with additional opportunities. Now my activities include the OHSU Quality Improvement Committee and Richmond Patient Advisory Council. I am also a founding member of the Patient Engagement Panel of OCHIN, a large health information network based in Portland. I recently joined the Member Advisory Council at CareOregon (Oregon’s Medicaid Managed Care Organization) and the Governor-appointed State Medicaid Advisory Committee.

I am also a patient advisor to the Accelerating Data Value across a National Community Health Center Network (ADVANCE) research network, which is part of PCORnet. OCHIN is the lead organization for ADVANCE and brought its Patient Engagement Panel into the project.

Keeping Engaged

More than 10 years ago, I gave up my second-grade teaching position to attend to my husband who has several chronic medical conditions and was unable to manage his medicines and care for himself. More recently, I’ve been diagnosed with ankylosing spondylitis, so we now use an outside caregiver to help us.

I always enjoy giving the patient or caregiver point of view. The researchers will talk and talk, and I’ll say, “Wait a minute. You are all overthinking this. Just do 1, 2, 3. That’s why you have included me—a real person.” It’s all exciting and interesting. I like to keep engaged.

I first learned about patient-centered care and heard about PCORI at a conference I attended representing CareOregon. I am naturally curious, and was once a children’s librarian, so I always have to look things up. When I found out more about PCORI, I decided I wanted to participate in its activities. Coming from the South, where healthcare is often far behind the times, I feel it’s vital to keep pushing forward to improve healthcare everywhere.

Learning about Research

Although I’ve been involved with public and community health, I’m just starting to learn about clinical research. I find it fascinating. It’s essential because it’s the way to show direct cause and effect. As a caregiver and a patient, I’ve often looked for accessible information based on scientific evidence. Often what was available was over my head or all over the place, sometimes too general, sometimes not general enough.

Now I’m helping researchers to collect information valuable to patients and caregivers. In my role with ADVANCE, I’ve helped review the draft of the questionnaire that the project will use, as well as tools for recruitment and patient-reported outcomes. In addition, I may serve as a patient partner in a project on low back pain, which I experience as a result of my ankylosing spondylitis.

Through my involvement with patient-centered care and research, I’ve gained so much knowledge with these many opportunities. A couple months ago, I was a co-presenter at a conference in Vancouver, when just two years previously, I was grateful to just attend the conference.

In the future, I’d like to see better alignment of the healthcare system with patients and caregivers. That will require more sharing, working together, and understanding each other. The researchers, who work so hard, need the patient and caregiver perspective to encourage them to take an efficient, straightforward approach.

I think the work PCORI is doing is vital. I’m delighted to be part of it. I just hope all parts of the country will use the evidence that results to improve the quality of patient care.

 

Dickerson is a caregiver, a member of the Board of Directors and several committees of Oregon Health and Science University Family Medicine at Richmond and of CareOregon Medicaid Managed Care Program’s Member Advisory Committee, OCHIN’s Patient Engagement Panel, and the State of Oregon Medicaid Advisory Committee. She also plays trumpet in several marching bands.

Comments

I wonder if any of your

Mar joM November 16, 2014 5:11 pm

Permalink

I wonder if any of your colleagues in this field are aware of the work of Jonathan Schooler, who espouses the creation of a non-confirmatory research results database. I have long thought such an idea fit perfectly within the framework of ACA and PCORI. Also answers questions such as dissemination.

  • reply

Thank you for the

PCORI November 19, 2014 8:37 am

Permalink

Thank you for the recommendation. We invite you to provide feedback on our framework for dissemination (coming soon) and hope you can participate in our December 10 workshop on dissemination. 

  • reply

hello. i am from poland. i

TheBep November 29, 2018 11:54 pm

Permalink

hello. i am from poland. i uwielbiam was!

  • reply

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): 

Kay Dickerson

Topics

Engagement Blogs
Guest Blogs

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]cori.org

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