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
  • Assessing Research Quality, Getting t...

Assessing Research Quality, Getting the Word Out Widely

Date: 
March 8, 2017
Blog Topics: 
Dissemination,
Peer Review Blogs,
Research

As the results of our first funded studies start to arrive, we at PCORI are working to meet one of the unique challenges laid out in our authorizing law. We are charged with assessing the scientific integrity of our primary research, and then making the findings quickly available in a meaningful and user-friendly format for all to see—patients, clinicians, and the general public, as well as scientists.

A handful of PCORI-funded research summary handouts laid out on a table.

To do this, we have developed and implemented new processes, not usually required of research funders, for evaluating the results of the studies we fund and translating them into short, easy-to-understand summaries to be posted on our website. To spread the word further, we have implemented a policy to support free public access to scientific journal articles reporting the final results of our studies.

Why the Effort?

Our efforts are part of the growing trend to make the results of health research—especially studies supported by public funds—far more widely available than in the past. Why? Studies show the results of clinical trials are often not reported either to the public or published in the scientific literature. There are various reasons for this. Sometimes a study was not completed, or the results may have been inconclusive and of little interest to a journal. Medical journals also tend to be less enthusiastic about publishing papers describing treatments found to be ineffective—what’s known as “negative findings”—than publishing positive results. Sometimes, when publication becomes challenging, investigators go on to other research, abandoning an unpublished manuscript on a topic previously of interest.

Whatever the reason, incomplete reporting of results wastes valuable public resources. Reports of negative findings can help clinicians and patients make decisions, as well as prevent duplication of researchers’ efforts. Unreported results also contribute to the problem of publication bias, in which the lack of negative reports makes evidence appear more clear-cut than it really is.

We want to be sure that results of the studies we fund advance science and reach those who need this information to inform their decisions.

What’s more, failure to report the results of any study is, in essence, disrespectful of the participants who did their part to further clinical research. It disregards their willingness to be randomly assigned to treatment and to accept the inconveniences associated with participation. Failure to report results can hinder future efforts to recruit patients to join healthcare trials. A recent federal policy addresses these problems by requiring public reporting on the website ClinicalTrials.gov of results from federally funded clinical trials within a year of their completion. With stiff penalties for violations, this policy is designed to drive more complete reporting of data and results.

As the nation’s leading funder of comparative clinical effectiveness research (CER), PCORI applauds this effort. But we go even further to provide the public with a more complete picture of the evidence that may affect health care.

Our Path to Informing the Public

We want to be sure that results of the studies we fund advance science and reach those who need this evidence to inform their decisions. To do this, we have put in place a process designed to ensure that the research results we bring to the public are valid, comprehensible, meaningful, and widely accessible.

A young minority woman working at a table on her laptop

Scientific Review

In our first step, when we receive a draft final report from a research team, we peer review it to assess scientific integrity, adherence to our methodology standards, and strength of its results. Our peer-review teams include patients and other stakeholders, as well as experts in the conditions under study and methods applied. The comments of our peer reviewers will be posted on our website along with the peer-reviewed final report of study results.

Translation and Public Reporting

Our authorizing law requires that we make study results available quickly in a way that is useful to patients, clinicians, and the public. We release our findings in several ways. First, once a project is complete, awardees submit their results for posting on ClinicalTrials.gov or another appropriate public database. Research teams may also publish findings in medical or other technical journals soon after they have completed their studies.

But these reports of results are intended for scientific audiences. They may be quite technical and difficult for someone outside the research community to understand. So we “translate” technical results into professional and public summaries that are easy to understand, but remain accurate.

Taking into account input from experts, patients, and other stakeholders, our Patient-Centered Outcomes Research (PCOR) Translation Center has developed user-friendly formats for these summaries. A team of writers drafts each summary in this format, with input from topic-matter and health-communication experts, as well as the lead researcher. Patients and other stakeholders review the summaries to make sure they are clear, are understandable, and highlight the key findings.

Incomplete reporting of results wastes valuable public resources.

We do all of this work under a deadline. The law says we must make study results available to the public within a 90 days of “the conduct or receipt” of awardees’ research findings, a timeline that we’ve defined as starting when we’ve completed our process of peer-reviewing awardees’ final research report. So, we begin preparing the summaries as the report undergoes peer review and then finalize the summaries to take into account reviewers’ comments and awardees’ responses. The end result: a concise lay summary and professional abstract for each project, posted to www.pcori.org.

We have begun this process as the first of our CER studies undergo peer review. We will make the public version available in both English and Spanish, and we will also post audio versions for the visually impaired.

Publication

The scientific literature provides another important means of presenting results—mainly to professional communities but also to journalists who review journal articles for possible news stories.

We encourage our investigators to publish in the journal of their choice at any time. However, journal articles are often available only to subscribers or those who pay a substantial fee. So we have joined with other funders who require that their awardees submit the final accepted versions of their manuscripts to PubMed Central; those papers are then available free of charge after an embargo period of usually a year or less.

However, to make study findings even more widely available, we go further. For articles describing final research results, we’ve recently begun to cover the fees that publishers charge to allow immediate free access to the full text. So far, we have done this for about 10 articles, a number we expect to grow substantially in coming months. We also list on our website all published articles resulting from our funded studies.

Meeting the Challenge

Our authorizing law laid out a substantial and groundbreaking challenge: to figure out how to make the findings of our funded research available—promptly and in a meaningful way—to all people who need them. With guidance from our stakeholder community, we have embraced this challenge as part of our commitment to provide patients and those who care for them with credible, useful evidence to improve health care. We are confident that we are well on the path to achieving that goal. Click here for more information about our efforts.

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): 

Joanna Siegel, SM, ScD

Director, Dissemination and Implementation
Dissemination and Implementation

Christopher Gayer, PhD

Topics

Dissemination
Peer Review Blogs
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