We continue our focus on the patient perspective with the second article in our two-part series with patient advocate T.J. Sharpe, a melanoma survivor who is now a dedicated advocate for clinical trials. Check out part one of the series here.
Praxis: How do you think your preexisting knowledge of clinical trials affected your experience?
T.J. Sharpe: I didn’t have a negative perception of clinical trials before my melanoma diagnosis. I wasn’t worried about being a guinea pig. What I did not fully understand was how a trial could offer me a study drug versus standard of care. Stage IV cancer does not have the option of placebo, which is something else I was unaware of. Having had prior exposure to the drug development life cycle certainly made me more comfortable getting on a trial because I understood how and why research was done, including the potential benefits for the patient. Even without an intricate knowledge of the current treatment options, I knew that clinical research was done by scientists who dedicate their life’s work to improving the health of others – because I had already seen that in practice. That firsthand knowledge removed the perception of a big, ominous drug company simply looking for new subjects to fulfill testing requirements – a mental image I’ve heard others express about the industry in general.
P: What do you see as the biggest misconception about clinical research? How can the industry address this?
T.J.: The most common misconception about clinical research seems to revolve around the narrative I just mentioned – the patient as a guinea pig for a large company seeking to make money from their illness. There is no easy way to address this. Presenting clinical trials as a treatment option up front would be a good start. Other than that, it takes time. The perception will shift based on patients sharing positive experiences with family, friends, and fellow patients.
P: You’re a big proponent of improving communication about clinical trials at the point of care. What role would you like to see healthcare providers play in that conversation?
T.J.: The first expert advice a patient receives during their diagnosis comes from their doctor or oncologist. These professional opinions shape the patient’s knowledge base and provide foundational information, upon which a patient builds their own medical knowledge. Those initial contacts are incredibly important and influential, thus mentioning clinical trials at the outset validates them as an acceptable treatment option.
In my opinion, to move the needle on patient awareness, there are two improvements the industry needs to make. First, clinical trials should be regarded as a standard treatment option and presented that way to medical personnel (including nursing and other non-MD staff) throughout their medical and continuing education. Second, the industry should be pointing patients and physicians toward trusted medical information sites. The volume of information found online is staggering, oftentimes confusing, and overwhelming, particularly for patients with little medical knowledge. Having a solid starting point for patients seeking information would clear up some initial confusion at the time of diagnosis.
P: When it comes to trial enrollment, what can research teams and their partners do to better focus on the needs of the patient?
T.J.: Each person and situation is unique, so it’s important to understand that trial documentation, particularly informed consent, is just supplemental information to having the medical team thoroughly explain the options, risks, and benefits of particular treatments. Sponsor-generated packets and legal documents are no substitute for genuine empathy and understanding of the patient’s particular needs, desires, fears, and treatment objectives.
P: What made you decide to make the leap from patient to advocate?
T.J.: When I was in the hospital after my initial diagnosis, I woke up from one of my procedures and had a “this is your life” moment. While I was successful and happy in the traditional “corporate” sense of the American Dream, there was a true lack of meaningful achievement – Had I really made the world a better place in my first 37 years here? I didn’t like the answer my heart was telling me. I felt there was a bigger purpose for me. I have a chance to impact change by sharing my experience that will pay forward the support and care I received during my journey. I made a promise that day to do what I could to positively affect the lives of others, and I am grateful each day that I get a chance to do so.
P: Why is what you’re doing so important?
T.J.: Because there are so many people in the health sciences industry who never see the difference they make in the lives of the people their products or services ultimately serve. Because there are doctors and researchers who toil through late nights and countless patient deaths who need to see that their work has a meaningful impact on individuals and families. And because there are other patients out there who are, or will be, diagnosed. Those patients need the hope I can provide and the work I can do on their behalf, just as so many did before me.
P: What does the future of clinical trials look like to you – and how do you think will this affect worldwide health overall?
T.J.: Clinical trial participation will increase – it has to, given the low participation rates we have now. It will become a better, and better-known, option as the barriers to communication and collaboration are removed. Given the industry-wide push toward patient centricity, these elements will collide to bring clinical trials to the forefront of medical treatments as a viable and desirable option across the spectrum of healthcare.
P: What would you say to a patient or a caregiver considering a clinical trial?
T.J.: Be knowledgeable. Understand what you’re signing up for so you can explain what the treatment is to someone who doesn’t know, and why it’s better or different than the other options they have. Ask questions. Do your homework. Finally, remember that you are ultimately in charge of – and responsible for – your own health.