The Patient-Centered Outcomes Research Institute (PCORI) has awarded Duke Anesthesiology’s Martha Kenney, MD, a one-year $125,000 grant for her project titled, “Creating a Theory of Change for Community-Driven Research in Sickle Cell Disease.”
Sickle cell disease (SCD) is an inherited and painful disorder affecting millions worldwide, predominantly individuals of African descent, with significant disparities in health access and outcomes. Research participation and engagement among individuals with SCD in clinical research is low, leading to their exclusion from evidence-based treatments and worsening disparities in health.
In an NIH HEAL Initiative-funded study, project lead, Kenney, conducted a series of focus groups with adults living with SCD to assess barriers and facilitators to a future trial of ketamine infusion for treatment of acute SCD pain. Factors influencing enrollment included privacy, confidentiality, drug safety, and patient-provider trust. Strengthening community engagement in research has been identified as a solution to increase patient-centeredness in SCD research and improve trial participation and retention.
Kenney proposes to develop a sustainable infrastructure for community-led expertise in SCD research with the goal to create a Theory of Change framework for community engagement. This infrastructure will involve patients, caregivers, and stakeholders in defining engagement, standardizing processes, and improving patient-centeredness in research. This approach utilizes a stakeholder-driven framework to enhance patient trust, increase community involvement in research initiatives, and address disparities in health outcomes for individuals with SCD.
Kenney’s project aims to develop a model for community engagement that enhances the quality and relevance of SCD research, ultimately contributing to reducing health disparities and improving outcomes for individuals living with SCD. By involving stakeholders in defining long-term goals and structuring community engagement processes, the project seeks to empower individuals with SCD, increase trust in the healthcare system, and improve patient-centered research initiatives in the field.
“This project is about more than increasing research participation - it’s about empowering patients and caregivers to help shape the future of sickle cell care,” says Kenney, assistant professor in anesthesiology. “I believe that we’re laying the foundation for a future where sickle cell research truly reflects the needs and experiences of the people it’s meant to serve.”
Learn more about Kenney’s efforts to advance sickle cell disease research, featured in the newly-published Duke Anesthesiology BluePrint magazine, “Persisting to Help Children in Pain.”