Learning to Listen to the Patient-Consumer

Shay Brill remembers shopping at malls during store hours, standing in long lines before Christmas, and the frustration of finding a retailer was out of the size or color of an item she wanted.

Today, she shops from a computer at any time that suits her, compares prices across retailers in an instant, and rather than carting the packages to her car, they arrive at her door.

The disruption technology has delivered to the retail sector has been experienced in a direct way by most of us. But similar disruption is under way in healthcare, according to Brill, vice president of corporate development for the Atlantic Research Group, a rare disease-focused contract research organization.

In a recent white paper on the rise of the patient-consumer, Brill argues that the types of changes seen in the retail sector are emerging in healthcare as well. This will have implications not only for the way healthcare is accessed and delivered, but affect all aspects of healthcare including the way clinical trials are conceived and conducted.

As technology has empowered consumers to be better informed, demand greater choice and service, and brought the retailer to where the consumer is, it is doing the same in healthcare. Providers, drug developers, and contract research organizations that fail to meet the demands of patients-consumers will do so at their own peril.

“Patients have been on a similar engagement trajectory, seizing greater control of their healthcare. If fact, broadly applying the traditional retail model to healthcare would allow the opportunity to view patients as consumers of medical data, advisement, goods, and services,” writes Brill. “Patients are then seen as independent purchasers, partners with others in their medical journeys, and co-authors of their destinies. The implications of ‘the patient-consumer’ are vast, ranging from gathering medical information to expressing desired needs to participating in the clinical trial design process.”

Consider Brill’s boss who recently suffered from a sinus infection. Rather than make an appointment and go to a doctor’s office, he used a service that offers a medical consultation with a doctor online 24-hours a day, seven days a week. From his computer at work he used the service, was issued a prescription, and picked up the medication that was waiting for him at his local drug store on his way home from work.

The difficulties clinical trial sponsors today face with recruiting and enrolling patients in their studies are helping to drive trial sponsors to be more responsive to patients’ desires. Brill notes 80 percent of trials experience delays because of difficulties meeting enrollment goals and some fail to complete studies at all.

That’s helping convince drug developers of the importance of listening to patients when it comes to trial design, making sure studies answer the types of questions patients care about, and doing what they can to make participation not too taxing on patients.

“A clinical trial succeeds or fails on whether it can enroll and maintain the prespecified number of subjects needed to answer the scientific questions or hypothesis,” said Brill. “Theoretically, if we can engage patients by offering study endpoints that value and considers the time it takes to collect the data, we can reduce the patient enrollment issues that we face in the past.”

One thing Brill’s firm has done is introduce what it calls “study champions.” Study champions support patients and site staff in a clinical trial. They help patients navigate care at home and in the clinic, direct patients back to the site for a medical event that occurs, make travel arrangements, train patients on any devices used to collect data, and remind them of study activities they need to complete.

Technology is helping too by prompting patients to take medications when they are supposed to and allowing them to do more at home with remote monitoring rather than having to travel as frequently to clinical trial sites.

“All of us are looking for opportunities to advance the science and efficacy of medical intervention so that our patient population can reap its benefits,” said Brill. “One of the best ways to do that is to simply ask the patient.”

As an example, Brill points to the case of a rare disease that affected children and their mobility at a young age. Drug developers were focused on addressing the issue of mobility, but when asked, the biggest concern parents wasn’t having a child in a wheelchair. Instead, the what concerned them the most was having a child who couldn’t sleep through the night. That not only affected the children throughout the day, but the parents as well.

“As a medical professional, we often think of the obvious—we need to find a way to improve their motor skills—when in reality the most important need is something that is not as obvious to us,” she said. “The real impact we can all have is to ask questions about, what is the value of this clinical trial? What do you hope to glean from it? And what are you most nervous about?”

Technology may allow trial sponsors to be more responsive to the desires of patients. It may also allow them to gather greater feedback from them. But while technology may be driving them toward a more patient-centric world, the only thing they ever needed to get there was a good set of ears.

October 23, 2018
Photo: Shay Brill, vice president of corporate development for the Atlantic Research Group