PCORI’s portfolio of funded research projects is home to more than 700 patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) studies aiming to generate important evidence about health conditions and treatment strategies. While this work is essential to improving health care, a well-documented delay exists between generating results and incorporating them into clinical and community practice. One way that PCORI supports shortening this timeframe is by supporting targeted dissemination of its funded research results.

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The Engagement Awards: Dissemination Initiative funds stakeholder-led efforts to share information, helping trusted community organizations make information understandable and usable for relevant populations. For these organizations, the role of a trusted source in raising awareness of new evidence or placing it in an appropriate context is critical to facilitating the uptake of evidence into practice.

Two recent PCORI Engagement Award projects supported work with targeted populations to quickly and efficiently conduct widespread PCOR/CER dissemination. The first trains journalists and researchers to communicate PCORI-funded CER findings to the media. The second project is mobilizing future clinicians to incorporate PCOR/CER into Wikipedia articles, integrating opportunities for professional practice with improvements in publicly accessible health information.

Training Journalists

The National Center for Health Research is an authority on medical and health information reporting. There, Diana Zuckerman, PhD, MA, who is president of the organization, is contacted weekly by reporters. From 2019 to 2021, she led a PCORI Engagement Award project that conducted training sessions and teleconferences to teach medical writers, journalists, researchers, and medical experts how to write about PCOR/CER findings.

These groups are uniquely positioned to share information, but each type of writer has their own challenges to delivering usable evidence to end users. Medical writers and experts can face issues with extracting and explaining research results in a way that the public can easily understand. This is problematic for individuals who have trouble navigating health information or who have low health literacy.

Utilizing media for widespread dissemination is a standard dissemination method, but PCORI-funded research is a fairly new source for many reporters. “We’re teaching them that PCORI is a place to look for information, trusted information, and then tell the stories,” Zuckerman said. “One reporter can disseminate to millions of people.”

Ultimately, this project reflects a focus on public and patient empowerment. Patient-centered outcomes research fundamentally focuses on outcomes that matter to patients, and the National Center for Health Research is dedicated to helping patients receive and understand the information they want and need.

Incorporating Wikipedia

Wikipedia is an online encyclopedia that allows users to access free information on almost any topic. In the past, concerns have been raised about the quality of Wikipedia’s evidence because the website initially allowed anyone to edit its content. More recently, however, Wikipedia’s community instituted more rigorous standards for editing its content. That change is facilitating projects like the Engagement Award undertaken by co-leads Lauren Maggio and John Willinsky. The project integrates Wikipedia editing into medical and pharmacology curricula at multiple universities, specifically focused on introducing PCOR to Wikipedia. Willinsky called the site a “patient-centered source to access evidence-based information,” emphasizing its enormous reach.

“Patients use Wikipedia more than journal articles; it has great public access and high standards,” Willinsky said.

The students inputting PCOR/CER results to Wikipedia are essential to the work of enhancing existing content related to health and clinical topics. The process benefits both the students and those who consume the content. “The skills we’re imparting—how to critically appraise research and identify gaps—are now able to be taught in context,” Maggio said. Current education for medical and pharmacology students on how to use Wikipedia is also setting them up for effective dissemination of research in their future careers. Thinking about how information can be communicated to the general public online orients researchers to the appropriate language and context.

Willinsky and Maggio faced obstacles implementing the Wikipedia curriculum during the COVID-19 pandemic. They did receive the opportunity, though, to complete a toolkit for educators who would like to incorporate this work at their institutions. This resource, along with the PCOR/CER findings posted as a result of their work, now and in the future, will be the enduring result of the project.

These projects utilizing unique methods to disseminate PCOR/CER represent only two examples of many in the growing Engagement Awards Dissemination Initiative portfolio. Several original approaches to disseminating research results will continue to emerge as researchers consider dissemination strategies that are appropriate for their communities.