Recruiting enough adults to participate in clinical trials to test new medical treatments is often one of the biggest barriers researchers face. In fact, only about 5 percent of adult cancer patients participate in trials, which are essential to getting new drugs approved.
“Social media is an untapped resource we might use to boost clinical enrollment,” said Mina Sedrak, a fellow at the Abramson Cancer Center of the University of Pennsylvania. “It may have the potential to promote much-needed clinical trial recruitment.”
Most patients don’t know that they could qualify for a experimental drug or procedure that potentially could be lifesaving — if not for them, then for future patients. In a survey of 6,000 cancer patients, 85 percent didn’t know participating in a clinical trial was even an option, according to the National Institutes of Health. Of those patients, 75 percent said they would have been willing to enroll if they knew it was possible.
“Unless your doctor tells you there are no other therapies and wants to send you to x, y, or z hospital, it’s very hard for patient to get involved,” Sedrak said.“
Sedrak, along with three of his Abramson colleagues and a Penn Medicine social media expert, conducted a 16-day pilot study last year to determine how people used Twitter to communicate about cancer. The results were published Wednesday in JAMA Oncology.
Sedrak and his team looked at 26,000 tweets that mentioned “lung cancer,” winnowed out the duplicates and tweets unrelated to the disease, and randomly selected a sample of 1,516.
The majority of tweets focused on psychological support or were about prevention. Another set of tweets focused on human research, many of which included links to relevant news articles.
“But only one tweet was being used to recruit for trials,” Sedrak said. “I was surprised by that.”
Outside a physician’s office, there are few places patients can learn about clinical trials, he said. Clinicaltrials.gov is the National Institutes of Health site where trials and results from around the world are registered.
“But when you go to the website, it’s very static and it’s not very easy to search,” he said. “You have to know a lot about your cancer to use it.”
Sedak said more research is needed to determine if Twitter might become a more effective way to communicate health information.
In the meantime, institutional review boards should develop ethical guidelines and weigh dilemmas about privacy and coercion that might arise if social media platforms are used to promote trials.
“We need to learn more about the ecology of social media,” he said. “It is clearly not consistently directing patients to the right places.”
Read more from the Check Up blog »