Last year, the Center for Information & Study on Clinical Research Participation (CISCRP) surveyed more than 5,700 people for an in-depth study on public and patient perceptions, motivations, and experiences with clinical research participation. The research showed the differences between where patients prefer to get their clinical trial information and where they actually get information about trials.
Many patients want to get information from their primary physician (52 percent) or their specialist (41 percent) but more people get their clinical trial information from the internet (46 percent) than from their primary physician or specialist (both 20 percent).
There are also some significant differences between patient-reported barriers to joining clinical trials and the reasons that oncologists believe patients don’t participate. According to a 2006 report, Oncologists believed most patients didn’t enroll in clinical trials because of the fear of receiving a placebo (67 percent), the fear of side effects (61 percent), and inconvenient study locations (59 percent). However, the majority of cancer patients said that the lack of awareness of appropriate trials was the biggest barrier to enrollment (65 percent). Fear of side effects, fear of receiving a placebo and inconvenient trial locations each accounted for less than 15 percent of responses.
The same study on cancer patients and oncologists showed that the vast majority (78 percent) of oncologists provided reassurance to patients that clinical trials are worth considering. Even though patients do often find information about trials online, they still often want to have one-on-one conversations with their doctors. Getting reassurance from someone who understands their condition and medical history can be very important to a patient in making their decision.
What do you think can be done to make clinical trial information more accessible to both doctors and patients? What kind of information would be helpful to patients in starting conversations with their doctors about clinical research? Comment below or send us a tweet.
Note: On July 15, 2014 we updated this infographic with animation. Take a look and let us know how you think they compare.