June 7th, 2017

The Call to Increase Patient Awareness About Clinical Research Opportunities


As the pace of drug development continues to ramp up, clinical trials can’t depend solely on physician referrals.

In one of her recent articles, Renata Khoshroo Louwers, a writer and bladder cancer patient advocate, led with a quote from a Washington Post piece:

“Oncologists can barely keep up. My sister found a trial I was a perfect candidate for, and my doctors didn’t even know it existed.”

“I can’t stop thinking about this quote,” Louwers said. To be honest, since I read her piece, neither can I.

Louwers goes on to describe her own personal experience with bladder cancer — she lost her husband to the illness a mere 11 months after he was diagnosed back in 2014. One of her greatest frustrations, she explains, was that everyone kept telling her how much progress was being made in cancer research when, in fact, that narrative directly contradicted her own experience.

Things started to change back in 2016 when the FDA approved a new bladder cancer drug (the first new treatment for the disease since 1978), which has since been followed by four more approvals for new immunotherapy drugs for advanced bladder cancer cases.

However, Louwers’ frustration remains. Why? Because the landscape is changing so fast, doctors are actually struggling to keep up.

An Awareness Problem

Louwers wrote another article back in October 2016 about how difficult it is for cancer patients to find and participate in clinical trials. “There is little that is more emotionally challenging than seeing someone you love dying of cancer and knowing that there may be an answer – but you can’t find it.”

Recent data seems to suggest that this is a widespread issue. Only about 3% of cancer patients participate in clinical studies, and some 40% of oncology trials fail to meet minimum enrollment requirements (failure rates rose to 60% for Phase III studies).

Part of the problem, as I’ve already mentioned, is an over-reliance on physicians to educate patients about clinical trials and make referrals. A survey conducted by Tufts CSDD found that of the 2,000 nurses and doctors who responded, less than 0.2% actively refer their patients to clinical trials. Part of the problem is that trials need to do a better job of engaging healthcare professionals and providing them with the key information necessary for them to make a referral; however, the even bigger issue is the sheer volume of trials are nearly impossible to keep up with. Back in February, I wrote an article citing a figure from ClinicalTrials.gov that there were 235,782 active clinical studies – approximately four months later, that number has risen to 246,481.

Connecting With Patients Directly

While there’s no single solution to this problem, I do think there are a number of underutilized tactics and channels through which the industry could raise the general level of awareness about clinical research opportunities.

More and more patients are turning to the internet and social media to conduct their own health-related research than ever before – by investing energy and resources into informative content/patient education, search and social media advertising, and online community engagement, sponsors and clinical research advocates make it much easier for patients and caregivers to find relevant studies.

The point is, patients want to participate in clinical research – in fact, in a recent NIH poll, 75% of the cancer patients who were surveyed said they would be willing to enroll in clinical trials if they knew more about them. As an industry, we’re making great strides towards developing new and effective treatments for some of the most serious conditions in existence. Let’s make sure we’re doing everything within our power to ensure that the patients who need those treatments can actually find them.