The oncology clinical trial patient spoke positively of her long, arduous experience. Did she praise the wearables and other innovative technologies that made the trial more convenient? Did she go on and on about the high-quality contract research organization facility?
Nope. “She focused on how the nurse called her every night during the trial to see how she was doing,” Lilly Stairs, patient advocate and head of client relations at Savvy Cooperative, told attendees of a “Patient-Preferred Trials” webinar sponsored by eyeforpharma on July 17. “The patient could hear the nurse’s children in the background and knew she was doing this from home,” Stairs said. “It meant a lot.”
Sure, it’s anecdotal, but Stairs’ story affirms a point the webinar panelists hammered home: Clinical trials are about patients as people, not technology or process.
“I’m glad to see industry is finally catching up and putting patients first in everything we do,” said Gretchen Goller, global head for patient recruitment at Icon. While no Luddite, Goller stressed technology and solutions cannot be created effectively in a vacuum. “Ask patients how they want to be communicated with,” she said.
Vertex Pharmaceuticals’ Kelly McKee advocated a “high-touch, high-tech” approach.
People are about relationships and stories,” she noted. If we want clinical trials to be preferred and advocated as an option, we need to ensure patients understand the importance of their role. We need to work hard to keep them in the loop during the earliest stages of product design and study development, she said. McKee is head of patient recruitment for rare diseases at Vertex. “We can’t just keep throwing the latest and greatest technology at them” and expect it to work smoothly, she added.
“We can’t lose the human touch” in clinical trials, Stairs said.
“We sometimes forget that clinical trial interactions need the empathic touch,” agreed Alicia Staley, senior director for patient engagement at Medidata.
As an industry, the clinical research enterprise is losing out by neglecting to incorporate patient input early and often. “I recently had a discussion with a technology expert who’s working in artificial intelligence for recruitment,” said Jane Myles, former head of operational intelligence and innovation at Roche. “The expert was very surprised to realize patients have not routinely been part of the design process,” she explained. While the technology industry is used to incorporating the user experience, “pharma is still learning about that,” Myles noted.
“If technology is going to be meaningful to patients,” the industry must keep its eyes and ears wide open, said Irfan Khan, CEO of Circuit Clinical. “Patients have a lot to say anytime they’re asked,” he added. “We have to do a better job of sharing that information, and we’ve got to put empathy at the top of any wish list [to advance clinical trials].”
Author: Michael Causey