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Wednesday, July 13, 2016

This week's blog post is an excerpt from last month's Cancer Experience Registry newsletter. This excerpt is from a Q&A with Dr. Patricia Robinson, Associate Professor of Hematology/Oncology at Loyola University Hospital, on the importance of cancer clinical trials. Learn more insights from Dr. Robinson and share the experiences of other clinical trials participants here.

Q: How do you talk to your patients about clinical trials?

The approach for me is really to start at the beginning and explain the disease process-the stage, histology, tumor biology, prognosis and expectations. That lays the foundation for thinking about a clinical trial.

The best way to instill faith in understanding the clinical trial process is through an open line of communication. Knowing exactly what your patients thoughts are about clinical trials is critical. There are always barriers to participating in clinical trials. It's important to have the conversation with your patient. If they are hesitant, what is the reason? Sometimes the barriers are invisible. They're not necessarily things you would think of. You may assume that it's 'I don't want to be a guinea pig,' but in the patient's mind, it's much more, such as, 'what if takes six hours to do the infusion', 'who's going to watch my kids,' or 'how am I going to get back and forth for the appointment'.

Q: What are the benefits for the patient of being in a trial?

For my patients who have been on clinical trials, the perceived benefits have been access to quality care, equal access to care, and in many respects, individualized care. These patients have a team providing their care, including the physician, research nurse, office nurse, social worker and everyone else involved in their care. We build the team for them. It's their village. We all care.

Q: Are there any special issues facing minority patients?

People's perceptions of clinical trials are often culturally based. Sometimes it is hard to get past the generations of mistrust in the medical community. That is one barrier, but it doesn't mean it shouldn't or can't be crossed. It may just take more time to have the conversation. I think this does have an impact on minority accrual to trials. That said, many of the misgivings people have are the result of things that happened so long that people don't even actually know the details. It's almost like whispering down the line. So we are trying to overcome a barrier that is only partially understood, and in which the situation is very different.

Q: How are clinical trials changing today?

Traditionally, people have thought about clinical trials as the last hope for patients. Today, they are really moving to the forefront, and are in many respects, the first opportunity to have access to new therapies.

We can offer trials to patients at any point during their cancer care. For many patients, we should think of trials as a first option, rather than a last option.

I hope that targeted agents and biologic agents are making it more appealing for patients to participate in clinical trials. They have definitely demonstrated improved outcomes. Patients are living longer because of them. That's really the most important outcome for most patients.

Q: How do clinical trials bring hope to patients?

Clinical trials do bring hope to many patients, especially when they understand the trial design, the goals of the study. Once people realize that trials are intended to improve outcomes, overall survival and quality of life, they appreciate the reasons for participating and the potential benefits.

We all perceive our patients as partner in the clinical trial. We are eternally grateful that they do participate. Without them, we could not do any trials.