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
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 philly.com, 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
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
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.