Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research

Abstract

Plain English summary Participating in clinical trials is an important measure of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to participate in clinical trials and are more likely to die from cancer compared to Whites. Including Black patients as research partners is one way to improve racial equity in clinical trial participation. We established a patient advisory council (PAC) including patients and caregivers with similar racial demographics as the patients receiving care at a safety net hospital cancer center. PAC members partnered with the research team to develop a vision, mission, and action plan to improve research participation among patients of color. PAC members used their lived experiences and training from the research team to help develop a strategy to improve representation of patients of color in cancer research. This paper is focused on the PAC development process.

Keywords

• Patient engagement
• Patient advisory council
• Cancer research
• Patients of color
• Black patients