A host of health tech startups and companies are advertising their apps and platforms as key solutions to improving diversity in clinical trials, promising to help researchers improve their outreach, enrollment, and retention — what one researcher calls a “modern-day gold rush.”
The Power platform focuses on breaking down medical jargon and helping users connect with trial sponsors nearby. Acclinate, meanwhile, touts a trust-building platform just for people of color and a cadre of specialists focused on outreach. Trial Library, among other tactics, pays clinicians to pre-screen patients for oncology trials, whether or not they get referred.
It’s a massive challenge to tackle. Clinical trials in the United States often leave out swaths of people who are non-white, non-male, non English-speaking, older, poorer, pregnant or lactating, and so on — which not only widens existing health disparities, but can also stall trials, costing billions and delaying research.
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And while experts in health equity agree tech can help address the representation issue, they also caution that there’s no single tech intervention that will solve it, at least not yet. Tech solutions focused simply on expanding access to clinical trials will only attract people who were already likely to enroll in the first place, they said. And tech-only solutions might also not do much to help people stay enrolled in trials once they enroll, they said.
“If it’s totally passive, where you’re just relying on people having an innate desire for the information, and then an innate desire to participate, coupled with a knowledge that there’s such a thing as participation — I don’t know how much that would move the needle on diversity on its own,” said Susan Schaeffer, CEO and founder of The Patients’ Academy for Research Advocacy, citing the need to make community engagement and awareness front and center.
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Tech solutions can’t necessarily fix some of the bigger, systemic issues, too, beyond just access and awareness, like underrepresented groups’ distrust of medical institutions, or trial sponsors’ inability to offer adequate help with transportation or caregiving needs, or the restrictive eligibility screenings that pharmaceutical companies still rely on.
The best solutions, the experts agreed, involve at least a degree of direct interaction with someone patients trust. And some tech companies are starting to move in that direction. Below, STAT looks at three startups that are exploring that kind of partnered approach to highlight the best of what they do and the challenges they still face.
Power
Power bills itself as “the most patient-friendly platform for clinical trials,” aimed at expanding access to clinical trials, and thereby making study populations more diverse.
The way it does that is simple: essentially, it’s a search engine for clinical trials — and offers up the data in a much more user-friendly fashion than the nearly 30-year-old National Institutes of Health version does. It helps patients connect with trial sponsors. It also lets patients tell its algorithm how comfortable or able they are to travel to a particular trial site — an effort to cut down on issues around transportation access. And its software keeps descriptions relatively free of jargon.
That effort to address health literacy is the core reason co-founder Brandon Li started the app. Li watched a close friend with a brain tumor navigate the clinical trial system on her own, and saw a need for an easier-to-use platform. He aims for a 7th-grade reading level, that of the average American.
“Most of these platforms, and most of the clinical trial information out there in the world, is written in complex medical jargon, that’s basically like Ph.D. speak for other Ph.D.s, that’s kind of reiterated for the purposes of compliance,” Li told STAT. “That just doesn’t cut it to … speak to the broader population.”
Though Power is currently only available for English speakers, a Spanish-language partnership is in the works. The plan is for clinicians at a Los Angeles county hospital site — who are generally already trusted messengers for the largely Latino and Spanish-speaking patients in the area — to use Power’s platform and other navigation tools to see if these tech-based options increase enrollment in a few selected clinical trials.
Li and former Pfizer CEO Jeff Kindler, an early investor who advises Power, didn’t have clear answers when STAT asked about which underrepresented communities they wanted to specifically target. Aside from the Spanish language partnership, they declined to share details about any new features or plans intended to increase diversity in clinical trial representation. Instead, they spoke broadly about lowering access barriers.
Jonathan Jackson, an assistant professor of neurology at Harvard Medical School, pointed out that there are already quite a few other clinical trial search engines aimed at patient recruitment in existence.
But Power’s got big believers: Late last month, it raised $7 million in seed funding from heavy hitters such as ARTIS Ventures, venture capitalists who were early investors in YouTube and where Kindler serves as operating partner.
Trial Library
A decade into her medical practice and research into cancer disparities, oncologist Hala Borno was struck by the ongoing lack of diversity in trials. She thought a lot about how precision medicine — leveraging biomarkers and genomes to do everything from diagnosis to prognosis, treatment plans to progress evaluations — was really about individualized care. The biomarker and genomic data needed to be more inclusive. Otherwise, cancer therapies would continue to be based on biomarker findings for just a subset of patients.
So she founded Trial Library, an oncology clinical trials company that relies on so-called “navigators” to help steer patients toward clinical trials that might help them.
Navigators evaluate social determinants of health and address any barriers so possible candidates for a trial are more likely to enroll, and they explain to patients where they are in their treatment plan. They also point them toward resources they may need, including funding for food or travel.
Members of underrepresented groups are more likely to trust and understand messengers from their own communities, so Trial Library ensures navigators are diverse and multilingual. These hires are trained in cultural competence and humility as well as health equity, Borno said.
The company also partners with oncologists, in hopes that their patients already trust them and have relationships with them. Trial Library is free for both patients and their physicians.
“Our North Star is equity,” said Borno. “Requiring a payment to access this technology and services will actually worsen inequity.”
Instead, Trial Library’s funding comes from clinical trial sponsors. The company also raised $5 million in seed funding last month.
Acclinate
Digital health startup Acclinate was forged in part from co-founder Delmonize “Del” Smith’s experiences with his mom, a health care worker who contracted drug-resistant tuberculosis. She never learned there was a nearby clinical trial running a treatment for her rare type of TB. And even if a provider had asked her to participate in a trial, Smith wasn’t sure his mom would have trusted the medical system enough to enroll.
It’s a gap he and co-founder Tiffany Whitlow work to bridge with their tagline to grow engagement: “Building trust with communities of color and empowering them to take control of their health.” This includes decisions around participating in clinical trials.
Acclinate, which raised $1.8 million in pre-seed funding and is finishing up a $3.5 million seed round, favors a layered engagement approach. At its base is a digital platform, app, and online community for people of color, particularly Black Americans, to share their stories and learn about medical issues. Specialists reach out to let them know about resources such as free health screenings, fairs, and clinical trials based on their interests.
The platform also funnels relevant data into a predictive analytics tool that clinical trial sponsors can buy. The product gives sponsors a pool of qualified and willing participants for their trials.
Acclinate’s operations are largely concentrated in Georgia, Florida, Mississippi, South Carolina, the D.C. metro area, and Alabama. Birmingham, where Acclinate has an office, holds a special meaning for tackling medical mistrust among Black Americans because of its proximity to the location where the infamous Tuskegee Syphilis Study was conducted, Smith explains. The company has plans to expand to Atlanta next, followed by other cities with sizable ethnic or racial minority groups such as Houston, Miami, and Detroit.
For now, Acclinate’s team is focused on setting up offices in the places they want to target, or at least hiring staff who have or will develop relationships within a community. In the future, they’ll expand their target racial or ethnic communities from largely Black Americans to include Latinos and Native Americans.
It’s a tall order for one tech platform to handle the tech literacy and access gap among intergenerational communities of color. When STAT asked how Acclinate engages people who aren’t tech savvy or lack internet access, Smith rattled off examples of on-the-ground efforts in two Alabama communities: The company printed out yard signs and mailbox inserts for a rural town where analog still rules. It sponsored an end-of-year celebration for a Little League in which lots of players’ parents had missed games because of health issues.
“I don’t care how much you’re able to use data to know where you should put sites in terms of vetting them in the communities,” Smith said. “You have to have an element of engagement with the community and with the potential patient population to get them to have a certain level of trust in the process. And that’s what I feel like we do. … We’re like a trust lubricant.”
