In a previous post, I described why I enrolled in a clinical trial at Stanford to treat my Hodgkin’s lymphoma. But I didn’t share the result: I received radiation therapy and chemotherapy — instead of the standard treatment of exploratory abdominal surgery — and I’m confident it helped me to be cancer free for the last 20 years.
However, my experience was unusual: Very few cancer patients participate in clinical trials and many aren’t even aware that they qualify for one. In order to advance cancer research, more participants are needed — especially ethnic and racial minorities who are vastly underrepresented in clinical trials. This is particularly important for diseases that occur more frequently or appear differently in non-white populations. For example, African American women have a 41 percent higher mortality rate for breast cancer than white woman, despite having a lower incidence rate, but only about 5 percent of clinical trial participants — for all diseases — are African American.
The Stanford Cancer Institute (SCI) knows this problem well.
“A key way participants learn about our cancer clinical trials is through physician referrals,” said Rachel Mesia, community engagement manager at SCI. “Physicians and oncologists practicing at Stanford educate their patients about clinical trials. They also network with physicians from other health-care practices to prompt them to make referrals.”
Participants also find Stanford cancer clinical trials through SCI’s clinical trials information service, which directs callers to an English- or Spanish-speaking outreach specialist who provides general clinical trials information and links callers to study coordinators.
Similarly, Mesia said SCI’s website and mobile app make it easier for patients to locate clinical trials that match their medical conditions using patient-friendly word searches. The mobile app will be updated in January to add new features.
“I’ve heard from many sick patients that they don’t have the energy to constantly go onto a search engine to see if any new clinical trials have opened up,” said Sarah Pelta, SCI’s communications manager. “That’s why were putting push notifications into our mobile app, as well as the ability to sign up for email notifications. So patients can just receive an email when a trial opens up that matches their search parameters.”
Also key to successful recruitment is the inclusion of stories from past clinical trial participants to help make a human connection. “From our website analytics and from speaking to patients, we know that patients really want to see what other patients are experiencing. So we’ve added patient photographs and videos to our website,” Pelta said.
SCI tackles the challenge of minority recruitment by reaching out to particular communities, in part by distributing information at community health and cancer patient events, Mesia said. “We also partner on educational presentations with a variety of community organizations, such as cancer support groups, social service organizations and churches,” she said. "And we participate in some ethnic-specific media interviews, including television, radio and newspapers.”
In addition, SCI has interactive kiosks dispersed throughout their cancer centers that provide basic clinical trials information and a search tool — in English, Spanish, Chinese and Russian.
Over the last six years, SCI has also held a Cancer Clinical Trials Awareness Week event to further increase visibility. In April 2017, this will be expanded to a month-long event highlighting genomics, immunology and other targeted approaches to cancer. It's open to the public and they’re planning to make the talks available online to expand access, Mesia told me.
The SCI has adequate participation overall, but they are still struggling to recruit minorities. “Currently our greatest disparity lies amongst the African American population,” Mesia said. “We’re doing okay with African Americans who are existing cancer patients at Stanford, but there is an issue when we look at our catchment area as a whole." One barrier is that fewer African Americans live near Stanford’s cancer centers, and those living in more distant Bay Area counties have significant commute challenges, she said. "The reality is that some people’s personal lives make it unfeasible to be part of a Stanford clinical trial.”
But that just means the SCI staff need to work even harder. “We need social and health equity for all populations who are getting cancer,” Mesia said.
Previously: Guidance on improving Asian-American participation in cancer clinical trials and NPR explores the need for improving diversity in clinical trials
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