In December, we published our first infographic. Our goal was to start a discussion around the question: “How often do patients receive placebos in cancer clinical trials?” After digging into the data from cancer trials registered on ClinicalTrials.gov, we found less than a 1 percent chance of a patient receiving a placebo alone on a cancer study. The majority of placebo-based trials adminster the placebo along with standard of care treatments.
We received some great constructive feedback on the graphic from the patient advocacy and clinical research communities through our blog and Twitter. We appreciate those who asked clarifying questions and gave us suggestions for future infographics. Armed with their input, we went to work on our second infographic.
Patient Participation in Clinical Trials
For this one, we decided to cast the net a little wider. We wanted to find out why people do and do not participate in clinical trials and present that information in an easy-to-read and easy-to-share format. We think that focusing on this topic could help to both alleviate some misconceptions patients may have about clinical trials, and help researchers to understand what areas of communication they should focus on improving in order to make the clinical trial experience better for participants.
One of the first things we learned in the process of the gathering statistics for this infographic, is that general lack of awareness about clinical trials among patients is a major issue. According to a study posted on OncologyPractice.com, only 16 percent of cancer patients know that clinical trials are an option they could explore; however, once patients do learn about clinical trials, 43 percent of those who are eligible do so.
Of course, there are several other reasons that patients don’t participate in clinical trials. Some of those reasons include…
- the fear of receiving a placebo,
- the fear of potential side effects,
- the worry that the standard treatment will be better than the drug being studied, and
- concerns about insurance coverage.
By bringing these concerns to light, and being transparent with information about the challenges and rewards that may come with clinical trial participation, we can help patients make the best possible decisions about their healthcare, whether that includes participating in a study or not.
According to a 2013 Perceptions and Insights study from CISCRP, 95 percent of those who have participated in a clinical trial say they’d consider joining another one.This seems to indicate that most of those who did decide to participate in clinical research had a positive experience. So now, the question is, how do we make sure that large numbers of patients who aren’t currently aware of clinical trials have a chance to learn about research opportunities?
We believe that creating infographics such as this one, and openly sharing information on clinical trials in social media are small steps toward the goal. What other steps do you think could be taken to increase awareness of clinical trials? And, what do you think of our latest effort? Please comment hear or give us a shout on Twitter.