Breakthrough Patient Recruitment

: Becoming Patient #1, Part 2: Advocating for Enhanced Education about Clinical Trials

Becoming Patient #1, Part 2: Advocating for Enhanced Education about Clinical Trials

Online Media Specialist

The Healthyist staff was recently lucky enough to have the opportunity to speak with T.J. Sharpe about his experience participating in a clinical trial and then subsequently taking that experience public and sharing his story with others.

In part-2 of this series, we discuss what he thinks can help better educate the public about clinical trials. You can read part 1 here.

What made you take your experience public?

I had already been sharing my story with a large number of family, friends, and even friends of friends, many whom I didn't really know.  When given the opportunity to chronicle my journey on, one of the most-trafficked sites in the Northeast, it became a good way to fulfill a vow I had made upon first being diagnosed. I woke up from one procedure in my hospital bed and (very groggily) remember saying, "When I get done with this, I am going to make a difference in the lives of other people." The blog has given me a great head start on that, and I consider it an honor that so many people have been influenced by what I write. It gives both a sense of purpose in my recovery (in addition to being here for my family) and a feeling of responsibility to help educate and give a good example of handling a cancer diagnosis. 

Why do you think people may be reluctant to participate in a clinical trial?

The "guinea pig" corollary is generally the most-cited reason; those who aren't necessarily in tune with how clinical trials work don't always realize the most cutting-edge medical treatment often happens in a trial setting. Also, the number of doctors in clinical research is far outweighed by those who are NOT involved and that majority often isn't up to date on the most promising experimental treatment. The typical patient often trusts their doctor to provide the best advice, without seeking out second opinions that can open the doors to other treatment options, including clinical trials.  

How can we better help patients understand clinical trials?

From my experiences, there seem to be two ways to address the issue. The first is continuing education of doctors, particularly non-research doctors. They are often busy managing a practice, spreading themselves across multiple offices/hospitals, and running a business all at the same time. It's unrealistic to expect every doctor in America to stay up to date on all areas of their specialty if they need to pull the information from somewhere. Improving their awareness would elevate the first line of treatment options to more often include pipeline drugs and clinical trial availability.

The second would be to connect newly diagnosed patients to the right information. It's nearly impossible to get good guidance for your situation without wading through the clutter of information offered by well-meaning acquaintances and Doctor Google. Honing in on the right options is a difficult process, so putting clinical trial opportunities at the forefront of those information searches-online, of doctors, of family/friends, from advocacy organizations-should have a significant impact on awareness of the opportunities. That would lead to interest in trials as a treatment option, as well as (hopefully) guiding them to the right sources to understand how trials work and what the benefits and risks are.

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