Advancements in technology have revolutionized clinical trials, enhancing what, where, how and when data are being collected. But despite these advancements, Black and Hispanic people are still hugely underrepresented in clinical trials. This means that we are not designing and developing treatments for the people who may need them the most, and we are denying people the opportunity to access new and promising treatments. How can we harness revolutionary new technology to increase diversity in trials and give access to potentially lifesaving treatment to those who need it?
For the third installment of #ClinicalEquality Sessions Live, IPG Health gathered some of the biggest names in tech and healthcare to explore this critical question.
Exposing the disparities
People of color are just as willing to enroll in clinical trials as their white counterparts, and yet they are some of the most underrepresented groups. Enrollment in clinical trials is often relegated to those with wealth, access and resources. The racial demographics of many trials don’t align with the percentages of either Black and Hispanic people within the overall population, or the specific disease incidence and mortality rates for those populations.
In 2021, Dr. Sommer Bazuro, global chief medical officer, IPG Health, and her team at FCB Health New York launched The Trial for #ClinicalEquality campaign to eliminate racial disparity in clinical trials. Bazuro explained: “We… run clinical trials to the exclusion of these people who are most affected by disease and then we draw clinical conclusions based on the results of this incomplete data. It’s both a moral and a scientific issue.”
Using data to support equity
One of the primary issues to overcome is that patients and their HCPs need to know about the clinical trials. While there is a centralized platform available that contains a lot of detailed information, clinicaltrials.gov, it is complex and not easy to navigate.
For that reason, Ricki Fairley, an 11-year survivor of breast cancer and CEO and cofounder of TOUCH, The Black Breast Cancer Alliance, has created a user-friendly platform where Black women can learn about breast cancer clinical trials that are relevant to them.
And it’s not just making the information accessible, it’s also how the message is delivered. Fairley explained: “We have developed this platform for Black women, about Black women, with Black women, so that when you go to our website you actually see people that look like you, giving testimonials and video content to explain how a trial works, what it does, what the requirements are and really help you through the process to make it accessible and a more trusting and safe environment.”
Decentralized clinical trials and smart tech
Decentralized clinical trials (DCTs) are studies that are executed through telemedicine, mobile and local HCPs and labs. They can be fully remote or a hybrid approach where there will be some physical site attendance required. By increasing the reach of clinical trials and reducing travel burden, DCTs are more accessible to a wider demographic of patients, hopefully improving not only recruitment, but also retention.
Dr. Ivor Horn, director of health equity & social determinants at Google Health, described some of the opportunities we have with DCTs: “…utilizing search and mapping tools to help people find those decentralized clinical trials and … then for those doing the trials, identify where there are those clinical trial deserts and address that and bring those resources to people.”
Using smart technology is a powerful tool in DCTs, especially when integrated into technology that patients or caregivers currently use or have, such as smartphones or computers. But in order to reach all demographics, we need to be aware of the growing digital injustice.
In some areas or demographics, access to technology and broadband may be limited, or the level of e‑literacy may not be high. Technology should also be accessible to an aging population. Bazuro explained: “As we age, eyesight diminishes, comorbidities increase that can result in shaking hands, medications bring with it certain side effects … we have to design platforms that can accommodate these differences.
“The platforms have to encourage seamless communication. It should be used as a tool to increase communication, not lessen communication,” continued Bazuro.
Creating real change
Recruiting more Black and Hispanic people into trials is critical. Technology has great potential to help, but there is a lot of work to do. Innovation starts with diversity. And everyone has a role to play, including stakeholders, regulators, industry, HCPs, investigators and technology designers. As put by Bazuro: “It is a moral issue, and it is also a scientific one.” There’s no time to lose.
Watch the full session on demand here.
It’s time to demand that clinical inequality end. Support the DIVERSE Trials Act.