Patients are eager to participate in clinical trials, but they’re having trouble finding the information they need — not just on social media, but from their own doctors, a new survey suggests.
Many respondents said they’d be interested in joining trials — nearly three-fifths said they would be willing to share genetic information or their health records as part of a trial — and one in five said they had proactively asked their doctors about trials, but only 15 percent had ever enrolled in one. Fewer than one in five said their doctor had suggested trials for them.
The survey was conducted by Inspire, a healthcare-focused social media platform, which surveyed nearly 9,500 of its more than 1 million patient and caregiver members about a range of issues, including awareness of clinical trials.
There also seems to be something of a gender gap in patient readiness for trials. Nearly one-quarter of men said their doctor had suggested a trial for their diseases, but fewer than one-fifth of women received similar advice.
This is the fourth year Inspire has surveyed patients and caregivers about their treatment. The ongoing lesson, Inspire Research Manger Hannah Watson Eccard says, is that people “are more than recipients of medical care. They are active partners who work with healthcare professionals to make medical decisions and find the best option for them.”
For some patient advocates, the Inspire survey is wake-up call to the trials industry.
“We need to do a better job of initiating conversations about new treatment options — especially clinical trials,” says Dana Dornsife, founder of the Lazarex Cancer Foundation, a California nonprofit that helps patients overcome obstacles to trial enrollment.
Dornsife says she and her colleagues “receive calls daily from cancer patients for whom standard care isn’t working and can’t find the information they need as they investigate clinical trial options.” The group is in the midst of a project it calls IMPACT, a three-year pilot program aimed at improving enrollment in trials.
“The system is fragmented and flawed and leaves many patients out,” she says. “And if a patient does find a clinical trial for which they’re eligible, they’re often blindsided, in many cases, by insurmountable travel costs just to get to the clinical trial. “