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How COVID is helping us move away from white-centered clinical trials to reach more patients

Sarah Gantz, The Philadelphia Inquirer on

Published in Health & Fitness

She offered a solution: standards for when in the treatment process doctors should talk to patients about trial participation.

There are other ways clinical trials could be made more patient-friendly, especially for people of color, said Elizabeth Plimack, deputy director of Fox Chase Cancer Center.

For instance, cancer trials tend to overuse placebo, which is when some participants receive the new treatment and others receive the current standard of care, she said. This uncertainty can turn off those already wary of feeling like they’re part of a medical experiment, she said.

In many cases, placebo isn’t necessary to test the effectiveness of cancer treatments. And when it is, the trial protocol could inform patients afterward which group they were in.

“There’s a 50/50 chance you’ll drive there and get an IV of saline,” Plimack said of trials that use placebo. “I think we can make trials better for patients.”

Another entrenched barrier to diverse clinical trials is a distrust of medicine rooted in a history of medical experimentation on marginalized communities and racism in health care. People repeatedly tell Guerra they don’t want to be “guinea pigs” and “test subjects.”

 

“There’s a spectrum of trust and you have to earn it,” she said.

That starts with validating the fear and mistrust people may have about clinical trials.

When Guerra speaks to communities about clinical trials, her presentation includes slides about Penn dermatologist Albert Kligman’s experiments on inmates at Philadelphia’s Holmesburg Prison between 1951 and 1974. She shows pictures of the men with patches of skin missing on their backs. Then she talks about how medical research policies have changed to ensure that unethical experimentation never happens again.

Guerra is leading an “ambassador” program that trains former patients, trial participants and family members to connect with underrepresented patient communities.

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