Each year millions of people are diagnosed with cancer. Meanwhile, hundreds of clinical trials testing potential treatments are ongoing. But there’s a gap between the people who need treatment and the people who actually end up in those studies.
Women and ethnic minorities are often underrepresented in cancer trials. For example, one 2018 meta-review of 310 clinical trials conducted between 2003 and 2016 found that non-Hispanic whites were more likely to be enrolled in clinical trials than African American or Hispanic and Latino participants. Over the course of 14 years, 83% of trial participants were white, 6% were Black, 5.3% were Asian/Pacific Islander, 2.6% were Hispanic and less than 1% were American Indian/Alaskan Native.
Excluding breast cancer, just 41% of trial participants were women.
There has been movement at the FDA to attempt to correct this. For instance, in 2020, the FDA released industry guidance designed to enhance the diversity of clinical trial participation.
One company currently operating in this space is Trialjectory, founded in 2017. The startup matches cancer patients to clinical trials. In 2019, it only had about 2,000 members. In 2021, the company is on track to reach 50,000 cancer patients.
Thirty-five percent of patients on Trialjectory are people from underrepresented backgrounds. Of that 35%, 60% are African American, 30% are Hispanic or Latino and the final 10% represent a mix of Native American, Asian, Native Hawaiian/Pacific Islander and “other race/ethnicity,” according to figures provided by a company PR representative.
Sixty percent of these patients are women — though that figure may be skewed because of a focus on breast cancer trial matching.
TechCrunch spoke to Trialjectory’s CEO and co-founder Tzvia Bader about the company’s growth strategy, creating patient community, why the pandemic has changed how people view their own healthcare and how tech and education go hand in hand in building diverse clinical trials.
The below interview has been condensed and lightly edited for clarity.
TC: I’m curious to hear about the growth in the amount of patients on your platform. What do you think has fueled it over the past few years?
Bader: I think a lot of the growth is with this changed mindset and understanding of patient roles. Until now, the majority of patients outsourced their treatment to a physician. Whatever he says goes.
One of the key things that happened was that we, as patients, need to own more of the decision-making. We don’t outsource our flights anymore, we go to Kayak. We don’t outsource buying a house, we go to Zillow. Fighting for our lives…we can’t outsource that. We want to be on top of it and know all our options.
The second thing is related a little to COVID. When COVID started, treatment got pushed to the side. They were left at home with mobile devices and a computer, frightened not just from COVID but because of their cancer. That basically gave them an even bigger kick in the butt to own their journey and look for options. It expedited this trend of taking ownership and leadership [of care.]
Finally, if you think about COVID: Who is owning the journey? It’s us. We decide when to get tested. We decide when to get the vaccine. We don’t need to go to a physician to refer us. It’s already creating this mindset of: I need to be in charge, I need to be in control.
Let’s say a patient decides ‘I want to be more active in my cancer care.’ How exactly are they finding you?
We like to be wherever patients are. Patients are online. They spend 90% of their time online educating themselves, searching, trying to understand.
We follow every aspect of their journey, and are creating content, like e-books to support them. We’re collaborating with advocacy groups. Even more importantly, there’s a big impact from patient-to-patient discussion and patient-to-physician discussion.
We’ve seen tremendous growth from this. Patients who found us, and used us, and told other patients. They’re part of patient communities, and they reach out online and offline for that type of support.
When we realized this network impact of the community we structured it even more. We have a program now called the patient champion. Patients that have used us become brand ambassadors and we’re leveraging them to share information with the communities they’re a part of. [Editor’s note: These ambassadors are unpaid, and the company says they have “a couple hundred” since the program was formalized roughly two months ago.]
That’s one of the key pillars of our growth strategy. Patients want to help other patients.
How do you select your patient champions?
They are people in our community who have indicated they want to participate, and are physically capable of doing it. Then, they do whatever they feel comfortable doing. Some would just like to share their story. That goes all the way to building additional communities.
For example, not all breast cancer patients are the same. Those that are in their 20s before kids suffer from different types of challenges, compared to those in their 30s, 40s, 50s and 60s. There’s a lot that comes into play also in terms of what drives the treatment decisions, and what’s a concerning factor.
Part of what the champions do is highlight those, and then provide support and information around it.
How have you been able to access groups that are historically underrepresented in clinical trials?
The reason we’re able to reach them is exactly because we’re reaching out directly to the patient. And, we’re reaching out to the large proportion of patients — 85% of patients — who are being treated in the community setting — not the large research institutions. The majority of them live in the America that’s not large cities.
We’re investing a lot in empowering them, in educating them and helping them understand their journey. We don’t leave them in a place where they’re still dependent on going to the oncologists, or they’re dependent on the oncologists’ time or knowledge to expose them to clinical trials.
That’s just not going to happen. Your oncologist doesn’t necessarily have time to invest in searching [for clinical trials]. And if patients have to search for themselves they get overwhelmed and confused.
We identify clinical trials, and explain why they are important. The information we give is patient-friendly. We show them key information that’s important to them: how many times treatment is given, how treatment is given. You need to understand if you can still go to work. Will I be able to maintain any kind of work-life balance? This is information they care about.
We also have a team in place whose main job is support. A lot of time people from more diverse populations will want to talk to someone. They want to hear a voice.
We have a team that is there for what I call “the last mile.” They’re there to listen and connect them with help if they need additional assistance. It might be: someone can’t go by themselves because they don’t have family nearby. So we might connect them to an advocacy group that can support them.
We help remove barriers to help them act upon their options.
It’s one thing to match patients with clinical trials. But how do you actually “activate” them, or get them to enroll?
If we really want to activate and empower people to take action, we need to help them understand, and help them navigate the journey. What we’ve found is that a lot of this helped with the activation.
The more I understand my options, the more likely I am to act upon it. Otherwise I might be afraid to bring it to my oncologist.
Here is a real use case. We had a patient whose oncologist wanted to put them on one of the PD-L1 inhibitors. But he saw on our platform that almost 40% of similar patients had reported progression with that treatment. So then he saw that one of the trials was a combination of that drug and another immunotherapy drug.
He went to his oncologist and said, what do you think of that [trial]? It changes the dialogue: he comes to his physician, and he understands his options. And, the physician actually said: ‘I hadn’t heard about that trial. I think it’s worth pursuing.’
It’s about giving the right options, giving them the data points and knowledge without scaring them, and without using language they don’t understand. And then from there, they’re acting upon it.
Originally published at techcrunch.com