CHICAGO, July 13, 2020 —Following decades of distrust and misinformation about clinical research and its role in the development of treatments and healthcare, a unique consortium of health educators are coming together on July 16 for a free event to educate the public about clinical research participation.
AWARE for All is a free program that aims to educate and empower the public in making informed decisions about clinical research. Led by the nonprofit CISCRP and supported by local research teams, advocacy groups, and a consortium of biopharmaceutical and service provider companies, the free online health education event about clinical research will be held online Thursday, July 16. The event is open to the public and will take place from 4 – 6 p.m. CST via a secure online platform.
This event includes free virtual health assessments, informational presentations that feature community organizations and research centers, local physician and patient speakers, a ceremony to honor clinical research volunteers, and raffle prizes. Participants will hear from a panel of speakers including patients, researchers, and health professionals; participate in virtual health assessments including meditation and mindfulness exercises, virtually visit a health fair expo with exhibits from local Chicago area health and wellness organizations, watch educational videos in the virtual Loop Theater and answer trivia questions to win raffle prizes.
The panel discussion with patients and researchers will focus on clinical research experiences, health advocacy and equity, COVID-19 research, oncology, and cardiovascular health. The goal of the unique event is to educate and empower people to make informed decisions about participating in clinical research opportunities.
“There continues to be a sentiment of distrust in some communities about medical research,” says Rabih Dahdouh, a clinical research associate at the Center for Health Equity Transformation at the Feinberg School of Medicine of Northwestern University, who will join the virtual panel of speakers on July 16. “It is important we expand the conversation about clinical research to include all people.”
Most people who take part in clinical trials are white or Caucasian. Non-white minorities make up less than 10 percent of all clinical trial participants. This is a problem because some minority groups get certain diseases more often. For example, African American men are twice as likely as white men to die from prostate cancer. However, African American men only make up 4 percent of men in prostate cancer clinical trials. Because of this, treatments for prostate cancer may not work as well for African American men.
Dr. Rosalind Ramsey-Gordon, a rheumatologist and health researcher at Northwestern University and a physician specializing in the treatment of lupus sees the impact of disparate research as well. She shares her thoughts on the importance of informing the general public about clinical research and the AWARE for All Chicago virtual event.
Forty-three percent of people with lupus are Black, but only 14 percent of participants in research studies on lupus are Black. Clinical trials not only test drugs and treatments; they also encompass community care education programs and non-drug therapies.
“We know we need to see better communications and culturally appropriate communications to expand the pool of clinical research participants,” says Gordon. “We’ve made a lot of progress in medicine and care over the last thirty years, but we can do better. There continues to be disproportionally higher deaths in communities of color and those can be tackled with increased diversity in study participation.”
Other panel speakers are Steve Satek, President & CEO of Great Lakes Clinical Trials; Paulette McDaniels, study volunteer, Northwestern; Jim Butler, study volunteer, Great Lakes Clinical Trials; and, Racquel Bruton, senior manager, clinical operations, of Biogen, a biotech firm specializing in neurological diseases and volunteers from oncology and lupus studies.
“Clinical trials are pressing forward in the age of COVID-19,” says Satek, a long experienced medical researcher and founder of Great Lakes Clinical Trials, an Andersonville-based firm with a second location in Arlington Heights. “The emergent virus has highlighted the need for new treatments, and it’s time clinical trial participants are recognized as the medical heroes they are.”
Gordon concurs, calling research participants “trailblazers.”
The July 16 virtual event is an opportunity for anyone curious about or considering participating in a clinical research study to learn more. The event includes an online virtual health fair that opened on July 10. Anyone already registered can access the virtual health fair, https://www.ciscrp.org/event/awarechicago2020/, and view educational resources from local health and research organizations including Drugviu, Equal Hope, Georgia Doty Comprehensive Health, Renewed Body Chiropractic & Wellness Center, LLC, Sisters Working It Out, Susan G. Komen, and University of Chicago Comprehensive Cancer Center.
Within the virtual health fair, visitors can navigate from room to room and visit vendor booths within each room. Each organization “booth” features an avatar who answers questions standing before a display board of information. The virtual health fair simulates a live event further with background chatter, individualized avatars, unique booth appearances, and the Loop Theater to watch a selection of clinical research educational videos. It was custom developed for CISCRP for the Chicago event. The Chicago AWARE event is the first one CISCRP has done virtually.
Anyone can register for the free online event on Eventbrite and learn more at awareforall.org or by calling 877-633-4376 toll-free.
The AWARE event planning committee and local supporters include the AWARE Industry Consortium, Peer Plus, Rush Institute for Translational Medicine, Allergy and Asthma Network, Aurora Advocate Health, Chicago Cancer Health Equity Collaborative, Force Medical, Great Lakes Clinical Trials, JDRF, Leukemia & Lymphoma Society, Lupus Society of Illinois, , NUCATS, SOAAR/Center for Food Allergy & Asthma Research, Susan G. Komen, and UIC Cancer Center.
The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. CISCRP provides free education and outreach to the general public and patient communities. Visit www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact firstname.lastname@example.org or call 877-633-4376.