Stories of Hope
Survivor Emphasizes Human Side of Clinical Trials
Article date: September 30, 2001
Participating in a clinical trial is what I can do to pay back a debt to those who have gone before me.
Patient Tapped For Feedback About Studies
Since she was first diagnosed with breast cancer in 1995, Carol Udycz, RN, enrolled in a total of three clinical trials over the next five years because she believed they could help her, and because she believed in the greater good. She ended up having more of an impact than she ever had expected.
“Participating in a clinical trial is what I can do to pay back a debt to those who have gone before me,” she writes in an article adapted from a talk she gave to the institutional review board that oversees all clinical trials at the Cleveland Clinic. The article is published in the July 3 issue of the Annals of Internal Medicine, (Vol. 135, No. 1: 58-59).
But Udycz went beyond the typical patient contribution of participation in an experiment. She was tapped by Clinic decision-makers to give a patient’s perspective on clinical trials as part of an overall examination of the research practices at the center.
Patient’s Viewpoint Leads to Reflection
Her comments led to policy discussions afterward on the inherent conflict of interest when the leader of a clinical trial is also the patient’s treating physician, and therefore the patient’s advocate, says Michael S. Lauer, MD, vice chairman of the institutional review board at the Cleveland Clinic.
“She gave us this talk, and it was extremely moving,” says Lauer, a cardiologist and epidemiologist. “And then she asked if there were any questions. I raised my hand and said, ‘Would you consider publishing this?’” Lauer offered to take her notes, edit them and submit them to the Annals.
“I wanted them to understand that as a patient, I’m always looking for a better state of health,” Udycz, 51, tells ACS News Today. She works for the very institution where she was treated, although not in the same department. She is the informatics specialist for Cleveland Clinic home care. She is married and has two grown children.
With her doctors, she says, “I need them to listen to me. I need it to be a team approach. I wanted their trust. The patient-physician relationship is based on [mutual] trust.”
Udycz says that inherent conflict never worked against her.
“You lead a clinical trial to improve patients’ health,” explains Udycz. She relied on her physicians for the information they could give her, but she also did a lot of her own research and took responsibility for asking questions and getting answers.
Physicians at all major cancer centers take on that dual role of researcher and advocate for their patients, says Terri Ades, RN, MS, AOCN, director of quality of life and health promotion strategy for the American Cancer Society (ACS). She says Udycz’s article probably reflects the experience of most patients who participate in clinical trials.
Researchers Get to Know the Patient First
“I have worked with oncology clinical researchers who got to know their patients first, and after they were familiar with a patient’s case they made a recommendation on whether a clinical study was appropriate,” Ades says.
“Make sure you make each patient your most important patient for that moment,” Udycz writes. “Make me feel special. I am not a ‘subject.’” The physicians and nurses need to arm participants with information so they can justify their decisions when queried by family members and close friends, she emphasizes.
Hope Is Key
Ades notes Udycz’s advice to professionals about alternative treatments that patients may hear about. “No matter how ridiculous these ‘treatments’ seem to you, they may offer hope to patients who have run out of options,” Udycz writes.
“The message here is that patients do need hope, and if the physician can’t offer hope, they turn to the alternative treatments that offer hope,” Ades says. “It’s possible we may lose patients because we’re not offering hope. Hope doesn’t have to be a promise. It can be a possibility.”
Carol Udycz also serves as a spokesperson for the “Look Good…Feel Better” public service program for female cancer patients. For more information, contact the toll-free number at 1-800-395-LOOK, your local ACS office, or see the Look Good...Feel Better website.