Wake Forest University School of Medicine receives PCORI award to improve patient and community engagement in research

Researchers at Wake Forest University School of Medicine have received an award from the Patient-Centered Outcomes Research Institute (PCORI) to develop a new tool that will help researchers meaningfully engage patients, caregivers, clinicians and community partners throughout the research process.

The two-year project will focus on improving how research teams collaborate with the people most affected by healthcare decisions. While involving patients and stakeholders in research leads to more relevant and practical findings, there has been no widely accepted way to measure what helps create successful partnerships and what barriers stand in the way.

To address this need, the research team will create and test a new survey-based tool called the Facilitators and Barriers of Engagement and Representativeness Scale (FIBERS). The tool is designed to help research teams identify strengths, recognize challenges and improve how they include various voices in health research.

"Better research starts with listening," said said Yhenneko J. Taylor,Ph.D., professor of social sciences and health policy at Wake Forest University School of Medicine and associate vice president of analytics and outcomes research at Atrium Health. "There are a variety of invaluable perspectives that can help shape research questions and solutions that matter in everyday life. This project will help researchers create stronger partnerships so that health research reflects the needs and experiences of the people it is designed to serve."

Through surveys and interviews, researchers will work directly with patients, caregivers, clinicians and researchers within Advocate Health, along with outside sites within research collaboratives and community partners, to better understand what supports meaningful engagement in research and what obstacles can make participation more difficult. Their input will be used to design and refine the FIBERS tool before it is tested with 350 stakeholders from a variety of backgrounds and research experiences.

The study will also be guided by a steering committee that includes patients, caregivers, clinicians and researchers, ensuring that stakeholder voices remain central throughout every phase of the project.

Once completed, the FIBERS tool is expected to provide research teams with a practical and reliable way to measure and improve engagement quality. By helping organizations better involve diverse participants and partners, the tool could contribute to more inclusive research and findings that are easier to apply in real-world healthcare settings.

The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI is a nonprofit organization with a mission to fund research designed to provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

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