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
    • Evaluating Our Work
    • 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
    • Intellectual and/or Developmental Disabilities
    • Kidney Disease
    • Maternal Morbidity and Mortality
    • 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.

    Engagement Awards

    Learn about our Engagement Awards program and view the announcements of all our open funding opportunities.

    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

    PCORI 2021 and Beyond

    During this webinar, PCORI leaders shared ways to get involved in PCOR, improvements to our funding opportunities, and more.

    2020 PCORI Annual Meeting

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

    Board Approves Future PFA Topics at April Meeting

    The more than a dozen high-priority research topics will be considered for PCORI Funding Announcements (PFAs) that will be released this fall and in 2022.

You are here

  • Blog
  • Clinicians and Patients as Vital Part...

Clinicians and Patients as Vital Partners in the Research Process

Date: 
September 30, 2013
Blog Topics: 
Engagement Blogs,
Guest Blogs

To mark PCORI’s third anniversary, we invited representatives of three of our key stakeholder communities – researchers, clinicians, and patients – to submit guest blogs talking about some of the experiences that have led to their interest in patient-centered outcomes research and their hopes for this field. In this blog, Leana Wen, MD, MSc, an emergency physician and member of PCORI's Advisory Panel on Patient Engagement offers her perspective. The views expressed in this blog are those of the author and not necessarily those of PCORI.

What’s wrong with the following picture?

Two researchers at a major academic center collaborate to study a disease. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. On the basis of this first study, the researchers start another cycle of idea generation, data generation, and publication. I presented this scenario during lectures to several groups: medical students, research fellows, clinicians, and patients.

They all had the same response to my question. “I don’t get it,” they said. “Isn’t this the way research is done?” That’s exactly the problem. This is traditional research, the type of research that all of us have come to accept as the “way that things are done.” Yet, such research leaves out a critical stakeholder—the patient—and sidelines the important voice of the clinician.

Bringing New Voices to the Research Process

Last April, I had the honor of participating as a member of PCORI’s inaugural advisory panel on patient engagement. PCORI is the Patient-Centered Outcomes Research Institute, an independent, non-profit research institute authorized by Congress to figure out how to meaningfully involve patients in comparative effectiveness research.

Some may argue with the necessity of such an institute. After all, isn’t research ultimately done to help patients? While grants and publications advance careers, few researchers go into such grueling fields to make money or gain fame. Isn’t research already serving the public good—doesn’t that mean it counts as being patient centered?

But here’s another way to think about it. In traditional research, patients are subjects. Their sole purpose is to participate in research trials, and their decision making is confined to whether to participate in the trial (setting aside, for now, the many throughout history who were subject to research against their will). Very rarely, if ever, do patients participate in the research design, data analysis, or result dissemination. Very rarely, if ever, do patients envision the research question and initiate the project.

Yet isn’t the patient—the one with the disease—the most knowledgeable about what needs to be studied and how? And what about the clinician—can she be involved, too, in coming up with research questions and implementing the results? No doubt, the researcher has irreplaceable expertise, but aren’t the patient and clinician also vital partners in the process?

Shifting the Model

In this time of health system transformation, where the patient is finally recognized as a necessary stakeholder and patient-centered care as emerged as a goal, the creation of PCORI is an attempt to shift the paradigm of how medical research is done. Rather than having patients as invisible, nameless subjects, PCORI requires them to be involved in the research design from the very beginning. Patients are expected to be equal partners in deciding what projects to fund and figuring out how to design studies with a patient-centered focus. They—and their clinician/providers—are expected to help figure out what’s important to study and how to get out the results beyond the realms of scientific journals and medical conferences.

Wen quote boxMuch about this concept of medical research is common sense. Most would agree that precious time and tax dollars should be devoted to what really matters to people. Yet, this paradigm shift is such a departure from traditional research that it is not without its doubters. Researchers, not used to involving patients, question whether they are sophisticated enough to understand the research process. Patients, too, doubt whether they have the expertise required. Fueling this is mutual mistrust: Will this new patient-centered approach derail existing research? Will patients end up being used for some nefarious ulterior motive?

Looking Ahead

Being part of PCORI’s advisory panels has reinforced the importance of patient engagement in research. I’m optimistic and excited about the potential of PCORI and hope that it will take into consideration the following points of guidance:

  • PCORI emphasizes that it aims to engage people, not just patients. So far, PCORI has done admirable work to involve many patient advocacy groups. However, these groups represent only a small portion of patients and may not represent the much larger proportion of people who are not traditionally captured in research involving patients. PCORI needs to go beyond hearing the loudest voices—many of whom may also have their own motives—and engage a broad range of people.
  • Researchers are smart and savvy and will come up with ways to tailor their proposals to PCORI’s guidelines. PCORI needs to be similarly smart and savvy to ensure that they differentiate researchers who truly have a patient-centered mentality versus those who are just checking a box to affirm that yes, patients are involved.
  • Clinicians represent critical stakeholders that are often forgotten in the discussion of patient-centered research. PCORI needs to engage clinicians, not just as the conduit to recruit patients, but in partnership with their patients and with researchers.
  • PCORI needs to address issues neglected in traditional research that are vital to our health care, such as preventive medicine, patient-clinician communication, and overuse and misuse of health care. This is necessary, as PCORI is on its way to becoming an organization that aims for “research done differently.”

Recognizing that there is a fundamental problem with the traditional conduct of research is a critical first step to making change. PCORI has opened a door that’s been shut for far too long. It is now up to all of us— as clinicians, as researchers, and most of all, as patients—to ensure that medical research and medical care focus on, and originate from, the patient.

Wen is an attending emergency physician, Director of Patient-Centered Care Research at The George Washington University, Washington, DC, and a member of PCORI’s Advisory Panel on Patient Engagement.

The views expressed in this blog are those of the author and not necessarily those of PCORI.

Comments

Regina Greer-Smith October 1, 2013 2:10 pm

Permalink

Leana has expressed the requirement for all PEOPLE to get involved with PCORI to transform the way research is done. We'll all benefit. Thanks, Leana.

  • reply

Joanne Senn October 2, 2013 12:56 pm

Permalink

I agree that research should be patient-centered. How involved should they be since some of the concepts may be difficult to understand for the layperson. It would be interesting to do a study on the degree of involvement that patients really want.

  • 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): 

Leana Wen, MD

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
  • Evaluating Our Work
  • 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

April 27
Priorities on the Health Horizon: Informing PCORI's Strategic Plan (Webinar #2)
May 6
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2021 Meeting
May 10
Cycle 2 2021 Nonsurgical Options for Women with Urinary Incontinence -- Applicant Town Hall

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
info@pcori.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