Alliance joins panel on increasing diversity in clinical trials
Clinical trials have a diversity problem. For example, while Black Americans make up more than 13 percent of the U.S. population, they only compose 5 percent of clinical trial participants, according to a report published by the Association of Clinical Research Professionals.
Science 37, a company that specializes in decentralized clinical trials, convened a gamut of healthcare industry leaders to discuss ways to improve clinical trial access and participation among underrepresented populations. The panelists included the Colorectal Cancer Alliance’s Ali Miller, our Senior Director of Community Engagement.
Click here to watch webinar.
In her remarks, Ali mentioned that many patients leave their initial appointments without the basic information required to find a clinical trial.
“At least for colorectal cancer, you need three pieces of information to use a clinical trial finder,” Ali said.
Patients need to know:
- That clinical trials are an option, even from the beginning
- Tumor type through biomarkers
- Their stage
“Providers are only getting about two minutes in the room, so the system isn’t setting them up for success,” Ali said. “I know people who were treated at NCI’s and went home Googling stage IV, hoping it was four-out-of-ten. We can help with this. We have materials. We know that sending people home with good written materials is evidence-based.”
She also asked trial professionals to “turn outward” and partner with trusted community organizations. Ali talked about how ally leaders have advocated for trial participation.
“They are embedded in their communities and have the trust of their networks,” Ali said. “It can be done, but it requires meeting people where they are … as equals.”
Panelists also discussed the shameful history of trials, including experimentation on persons of certain races and ethnicities without their consent. Additionally, most Principal Investigators, who lead trials, are white. Ali offered that diversity of perspective amongst researchers could introduce important, novel research questions or improve the cultural sensitivity of trial protocols and encouraged researchers listening to stay tuned for the Alliance’s next funding cycle.
Additional panelists on the webinar included:
- Kim Fookes, Global Head, Diversity and Inclusion in Clinical Trials, Novartis
- Rodrigo Garcia, M.D., M.S.H.S, VP Patient Centered Trials, PPD
- Lydia A. Isaac, PhD MSc, Vice President, Health Equity and Policy, National Urban League
- Ryan Pack, Global Head, Diversity in Clinical Trials, Science 37 (Moderator)
The entire webinar is viewable on YouTube.
Top resources
Senators Markey, Klobuchar, Rep. Carson Introduce Legislation to Address the Surge of Cancer Among Young Adults
Senator Edward J. Markey (D-Mass.), top Democrat on the Health, Education, Labor, and Pensions (HELP) Subcommittee on Primary Health and Retirement Security, along with Senator Amy Klobuchar (D-Minn.) and Congressman André Carson (IN-07), introduced the Asal Sayas National Strategy on Young Adult Cancers Act to establish a national strategy to tackle the growing epidemic of cancer among adults under age 50.
Hidden Barriers Could Contribute to Rising Colorectal Cancer Deaths in Adults Under 50
As the nation observes Women's Health Month (beginning on Mother's Day) and Clinical Trials Awareness Month, the leading nonprofit Colorectal Cancer Alliance (Alliance) is calling on patients, caregivers, and healthcare providers to confront the urgent and underrecognized public health challenges that may be contributing to the rising death rates.
In Memoriam: Asal Sayas
Asal Sayas, a force for good in public policy and a champion for patients, who worked for both a president and a senator, died Tuesday, April 21, after a defiant six-year path with young-onset colorectal cancer. She was 42 years old.