HIV-infected adults from minority ethnic groups are willing to participate in research if asked

HIV-infected ethnic minorities are underrepresented in HIV research. We sought to better understand the reasons for the low participation rates. An anonymous 1-page survey was administered to HIV-infected patients attending primary care clinics at the CORE Center in Chicago during 8 weeks in 2007. Four hundred seventeen HIV-infected patients (mean age, 43 years; 60% male, 65% African American, 21% Hispanic) completed the survey. Forty percent had previously participated in research but only 29% had ever been asked by their primary care provider (PCP) to participate. The strongest predictor of participation was being asked (RR 3.0; p < 0.001). The majority of patients would agree (65%) or consider (30%) participating in a study if recommended by their PCP. Being treated like a "guinea pig" was the most common (40%) concern of patients. However, despite this concern, patients would still agree to participate if recommended by their PCP. In our urban cohort of HIV-infected patients, the majority were willing to participate in HIV research studies if asked, highlighting the important role of primary providers in improving research participation.