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Are Clinical Trials Right for Me? Creating an Online Decision-Making Tool for Patients

PRE-ACT (Preparatory Education About Clinical Trials)

January 27, 2015

By Neal Meropol, MD, FASCO

Dr. Neal Meropol is chief of the division of hematology and oncology at University Hospitals Case Medical Center and Case Western Reserve University in Cleveland, Ohio. He is also the Associate Director for Clinical Programs at University Hospitals Seidman Cancer Center.

As a practicing oncologist in an academic medical center, I am always looking for new ways to improve care for my patients. The best way we have to test new therapies against cancer is through clinical trials. Unfortunately, although clinical trials are critical for advancing cancer treatment and ultimately serve as the basis for new standards of care, very few patients participate.

In my own research, I've tried to understand the barriers that exist for patients in considering clinical trials as a treatment option. In addition to not being able to access research studies, we have identified a variety of knowledge gaps and attitudes that might interfere with a person's willingness to participate in a clinical trial. Some people have never heard of clinical trials, and others are worried about the side effects that they may experience on a clinical trial or the possibility of receiving a placebo.

It occurred to me and my colleagues that we could help people make better decisions about their treatment options if they were more prepared to learn about all of the possible choices-both standard therapies and treatments given as part of a clinical trial. We thus developed an online program called PRE-ACT, Preparatory Education About Clinical Trials.

The basic idea behind PRE-ACT is that we can help patients make treatment choices that are best for them by addressing their knowledge gaps and attitudes about clinical trials before they meet with their oncologist for the first time. To do this, the PRE-ACT program asks patients a series of questions to identify their knowledge and attitudes about clinical trials. Based on their responses, PRE-ACT delivers a series of videos to address their specific concerns.

To see how well this individualized approach worked, we tested PRE-ACT among 1,200 cancer patients. Half of the patients received the tailored video education found in PRE-ACT, while the other half received written information about clinical trials that was not specifically chosen based on their survey responses. Although both the PRE-ACT videos and the written materials improved participants' knowledge, reduced attitude-related barriers, and improved their preparation to consider clinical trials as a treatment option, we found that PRE-ACT was better than the written information in reducing barriers.

Based on these encouraging results, we sought to make PRE-ACT more widely available. Since Cancer.Net is a premier cancer information website, it seemed like an ideal home for the program. After almost a year of website development (and a decade of research), I'm now thrilled to see PRE-ACT available to anyone who has an interest in learning more about clinical trials!

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