A Presentation at the Weekly Meeting of the Institutional Review Board

• Professional staff committees
• Clinical trials, phase III
• Physician-patient relations
• Patient participation
• Patient satisfaction

Good afternoon. I consider the opportunity to address this group a great honor. I hope to provide you with valuable information by offering the patient perspective on experimental protocols. I am the research participant.

Many people who know me think that I'm an expert on human experimentation, as I have had the good fortune of participating in three clinical trials during the past 5 years. I am not an expert, but I do consider myself a survivor because of those trials. Personally, I believe in the value of participating in clinical trials: It is what I can do to pay back a debt to those who have gone before me. The least I can do is to keep the momentum alive.

A little about myself: I am 50 years old, happily married for 25 years, the mother of two children. I have been a registered nurse for nearly 30 years and have spent most of my professional life in home care. I don't smoke, don't eat red meat, and drink only socially. I have always exercised and participated in sports. As the saying goes, “I was never sick a day in my life.” Until I found … the lump.

I was diagnosed with breast cancer in July 1995. I underwent a left mastectomy, a Portacath insertion, and dozens of tests and began an aggressive regimen of experimental chemotherapy—all within 6 weeks.

At my first visit to the oncologist, I was filled with fear. My oncologist, Dr. D., was kind, gentle, knowledgeable, and informative. He presented treatment options and suggested that I participate in a clinical trial. He explained all the risks and answered all my questions, except for the most important one: “Will this work?”

Of course, I knew he couldn't answer that question, and I knew better than to …