MIMICT currently focuses on primary-care providers serving African American patients, but proposed future programs include materials for providers serving Latino patients, and nephrology and dermatology healthcare teams. In June and July, ACR staff evaluated how well MIMICT increased communication between referring providers and clinical trial sites in Georgia and North Carolina. Current materials include tips for clinical trial investigators to more effectively communicate with healthcare providers in their area and online guidebooks on ways to improve communication with African American patients about the value of clinical trials, including the pros and cons of participation. Download MIMICT educational materials at www.thelupusinitiative.org/mimict.
Physicians Rarely Mention Trials
Atlanta attorney Christopher Reed is an African American lupus patient serving as an advisor for the MIMICT program. Mr. Reed also serves as co-chair of advocacy for the Lupus Foundation of America’s Georgia Chapter and chair of the Advisory Council for the Georgia Council on Lupus Education Awareness. One reason African American and Hispanic lupus patients lack awareness about currently recruiting clinical trials is that their physicians never bring up the subject, says Mr. Reed.
“I’ve had a handful of rheumatologists and other medical providers as part of my team over the last 27 years since my diagnosis. In that time, probably only once has a doctor said to me, ‘Would you consider participating in a clinical trial?’” says Mr. Reed. “Patients don’t know what’s out there. Yes, there are organizations promoting clinical trials, but it’s rare that this information is communicated except by word of mouth.”
Even some landmark clinical trials for belimumab (Benlysta), the first biologic drug approved by the U.S. Food and Drug Administration (FDA) to treat SLE, such as BLISS-76, had low African American patient participation, says Mr. Reed.3 According to data presented by the Society for Women’s Health Research in 2011, African Americans comprise 12% of the U.S. population, but only 5% of participants in clinical trials.4
Mistrust of medical research is one potential barrier to greater minority participation, Mr. Reed says. “When you speak about clinical trials to African Americans, they think of Tuskegee,” referring to syphilis research conducted on African American men in the 1930s, in which patients were not given informed consent or proper treatment for their conditions. “They may say, ‘I don’t know if I want to participate in a clinical trial.’
“We need more open communication between patients and doctors about clinical trials, and doctors need to be more aware of patients’ sensitivities. MIMICT can help close those gaps and cultural differences,” says Mr. Reed.
