Technology can tell us about the weather at any time, on any day, almost anywhere in the world. Shouldn’t it also be able to tell a patient where to find a clinical trial that could save their life? It could certainly be part of a multipronged solution to make clinical trials more accessible, but it’s about how we design the technology, and who is involved in the design process.
After campaigning for better racial representation in clinical trials over the last two years, The Trial for #ClinicalEquality was invited to explore this issue on one of the world’s biggest stages: SXSW.
Joined by a panel of representatives from Google, Genentech, and TOUCH, IPG Health’s Chief Medical Officer Sommer Bazuro, PhD, took to the stage to moderate a discussion about tech-enabled inclusive clinical trials.
Here are some highlights from the discussion.
Knowledge is power
In her role as Genentech’s first ever Chief Marketing Officer, Erica Taylor, PhD, has made it her mission to help her organization boost its diversity, equality, and inclusion efforts. To provide context for why clinical trials are still not very inclusive, she pointed toward two key issues.
“The first is information. Just people needing to know…of these experimental therapies that are being tested and understanding what that might mean for them and their treatment,” Erica said.
The second issue is access, since clinical trials are usually conducted in a small pool of research centers and academic hospitals that don’t necessarily serve diverse populations.
Ricki Fairley, eleven-year breast cancer survivor, is intimately familiar with the lack of awareness about clinical trials among Black women. From her perspective, Black women aren’t informed about clinical trials because their doctors aren’t inviting them to participate. That’s why her organization, TOUCH, is giving Black women the tools they need to advocate for themselves, through online information as well as in-person events.
“Our health illiteracy is driving a lot of the health inequity,” she explained. “We built a community around women who had been in trials, had experience with trials, explaining the information to patients…in a very elementary way.”
Time to reinvent the wheel
By signing up 7500 Black women for clinical trials since last May, TOUCH has evidently created a successful model for boosting awareness.
But the issues TOUCH deals with aren’t unique to Black women and breast cancer: they are systemic. So, it’s time we reinvent the way we educate patients about clinical trials as a whole.
According to Dr. Ivor Horn, Director of Health Equity and Social Determinants of Health at Google, “3 out of 4 people actually go to the internet when they first have a health question… So, our task is, how are we democratizing health and how are we making that information accessible in ways that people can consume.”
For Ricki, it’s all about finding underserved communities where they are: on social media. “Social media is very powerful…we try to use social media as a tool to reach our community. We know where to find them, and we know whether things are working or not.”
One place that is also ripe for more consumer-centric disruption is ClinicalTrials.gov, the central database for clinical trials that are conducted in the US.
However, Erica highlighted that the user experience on that site is less than optimal: “Even as a sponsor, I have trouble finding our studies on ClinicalTrials.gov… What would it be like if we took this information, created a better user experience, and made it something that was more helpful for patients?”
Imagine clinical trials, right at your doorstep
Even if more patients become aware of clinical trials, there is still the issue of access for patients who have difficulty traveling to research centers. This is why Genentech is looking into ways to facilitate more “decentralized clinical trials,” or as Erica called it, a “hub and spoke” model.
“So maybe the hub is an MD Anderson, but you’re able to get your monitoring in the community where [the patient] actually is,” she explained. “And that data can be sent securely and appropriately to the hub that’s collecting that.”
Decentralized clinical trials could also be facilitated through wearable-based patient monitoring. For example, there are already wearables and apps that could be repurposed to help a patient with multiple sclerosis measure their mobility: “You can actually just leverage a lot of the things and the technology that we have today,” Erica suggested.
In conclusion: Innovating for Inclusion
Whether the solution will involve new technology or not, the most important thing is that we truly innovate with the intention to include those who normally get excluded. Not to create another expensive gadget for affluent, well-educated patients living in major cities.
“Everyone already has a smartphone, but not everyone has the [necessary] level of internet bandwidth,” Sommer reminded the panelists. “We also have to think through who the end user might be.”
That’s why involving the end user in the development process is key. “My reminder to people as they’re thinking about clinical trials: Make sure you’re designing with [the end user],” Ivor emphasized.
While the issues raised during the discussion remain complex and multifaceted, all of the panelists feel optimistic about the future. “To me, the size of the problem shouldn’t intimidate us from moving forward. I think it is possible to do this in a way that does meet all of our regulations,” Erica stated.
“Right now, everyone is working in silos, and so we appreciate everyone wanting to come together in order for us to tackle this issue,” Sommer concluded.
Get the facts. Watch the full panel discussion on demand.
