Path to prescription: Should you participate in a clinical trial?

Mary Woolley

Nine years ago, Rebecca went to the emergency room with appendicitis-like pains. CT scans revealed that she had a tumor the size of a grapefruit sitting on her ovary. She was diagnosed with late-stage ovarian cancer, which has a five-year survival rate of 39 percent.

“It was like a big baseball bat to the stomach when you find out you have cancer. The fear of the unknown is intense,” recalls Rebecca. “You think, is life over.”

Finding a trial

After receiving her diagnosis, Rebecca had surgery and chemotherapy, yet cancer cells remained in her body. Up to that point, Rebecca had heard of clinical trials but didn’t know much about them. Based on her doctor’s recommendation, she decided to enroll as part of her cancer treatment and to contribute to medical research.

The trial involved taking four pills a day and receiving a 30-minute infusion of drugs every two weeks. The experience, which included a few more doctors’ appointments, became part of her daily routine and the information gleaned from the trial not only proved valuable to her—it will likely benefit others moving forward.

Rebecca is managing her cancer and has resumed her ‘normal’ routine of going to work, traveling and jogging. Her story demonstrates that volunteering for clinical research to improve treatment of disease and quality of life is often a very positive experience. She hopes more people will listen to the recommendation of physicians as they educate patients about the benefits of participating in clinical trials.

Setting the stage

Rebecca is not alone. More than two-thirds of Americans (72 percent) say it is likely they would participate in a clinical trial if recommended by their doctor, but only 22 percent say a doctor or other health care professional has ever talked to them about medical research, according to a recent, national public opinion poll commissioned by Research!America. The poll findings underscore the role of health care providers in addressing concerns among patients and debunking myths that have contributed to a degree of skepticism and low participation rates.

When asked if they or someone in their family have ever participated in clinical trials, only 15 percent of non-Hispanic white respondents said yes, and the percentage is similarly low for minority groups (17 percent of Hispanics, 15 percent of African-Americans and 11 percent of Asians). Physicians play a critical role in informing patients about clinical research, but it is especially important that patients take the initiative to ask about participation in a trial.

Everyone who cares about the future of health—every stakeholder, from patients and family to academia to industry—has the responsibility to step up to change public perception of clinical research and make participation in research a health behavior that all Americans can embrace. As technology evolves, mobile apps and other devices can be useful tools to encourage more people to volunteer. Substantive conversations on clinical research in-person or on digital platforms can be a life-changing experience. Just ask Rebecca. 

To learn more about Rebecca’s story, visit www.acrohealth.org.

(The article can be found in a special insert on clinical trials in the December 18 weekend edition of USA Today.  http://www.futureofhealthcarenews.com/)

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Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco