Making purchases online has never been easier, with shoppers moving quickly along a streamlined path from browsing to buying.
“Every piece of the funnel is optimized so that you will end up buying something,” said Yael Elish, founder and CEO of StuffThatWorks, a crowdsourced platform aimed at helping patients find treatments for their chronic illnesses.
But the opposite can be true for those in the market for a clinical trial, she said. In fact, a StuffThatWorks survey showed that participating in a clinical trial can be an obstacle-studded pathway that’s driving interested patients away.
The online poll of more than 6,000 adults with a range of chronic illnesses — from fibromyalgia to high blood pressure and depression — found that while more than 93% said they would be interested in learning more about participating in a research study, nearly 96% said they’d gotten little or no information from providers about clinical trials in the last six months.
“There is also a perception by patients that pharma is not doing a very good job in communicating, or has no interest or some disinterest, in engaging with patients and communicating about clinical trials,” Elish said.
“As an industry we still have work to do to reduce [clinical trial] burdens.”
Xoli Belgrave
Executive director, drug development services, Parexel
Patients told about a trial are often dissuaded by transportation costs, reluctance to miss work and inconvenient schedules. While 23% of people said they wanted to participate because they had no other treatment options, financial factors weighed heavily on their decision-making. About 41% of those polled faced financial stress, and more than 31% said finances would factor into their willingness to participate. But 19% said having their treatment covered or receiving an honorarium could pave the way.
Signs of change
While trial enrollment challenges persist, progress has been moving in the right direction over the past two to three years, said Xoli Belgrave, executive director of drug development services at Parexel, in an email. Clinical trial participation has ticked up thanks to industry efforts to draw in patients.
“The regulatory landscape around the world supported this with guidance that encourages sponsors to think about patients earlier on in the drug development process,” she said.
Despite improved measures to engage underserved groups and initiatives by patient-advocacy organizations, enrollment remains a struggle and troubles typically begin at the outset of their treatment journey, Elish said.
“People rely on their doctors as a source of information or for guidance,” she said.
But the survey found that just 13% of patients’ doctors explained the potential benefits of a clinical trial. Doctors often have limited time with patients and providers have a disincentive to recommend trials — if the patient accepts, they lose the patient, Elish said.
Once a patient learns about a trial, additional barriers arise.
“Time required to attend visits continues to be a patient and care partner burden as does the cost of lost income and/or travel,” Belgrave said. “As an industry we still have work to do to reduce such burdens.”
Patients also balk at trials due to the complexity of participating.
“Patient groups and communities are asking us to simplify the language for all patient interactions beginning with the patient information leaflet and informed consent form,” Belgrave said. “When patients are overwhelmed, they can either pull away or sign without being informed.”
Where pharma can improve
New strategies are slowly making a difference, Belgrave said, including the rise of concierge services, specialized support services that help keep patients on track as they move through trials, and patient apps that ease check-ins, providing reminders and instructional videos.
“Flexible clinic times — early morning, late evening or weekends — are opening up trial participation options for people who work shifts or who cannot attend a 9 a.m. to 5 p.m. clinic visit for other reasons,” Belgrave said.
Still, the industry needs to make wholesale structural changes to the trial pathway as they seek to bridge the enrollment disconnect, Elish said. Survey data shows that patients want to join trials, but numbers will remain low until trials provide better information, outreach and protocols to make it possible.
