Mobile health provides a large and serious opportunity for the improvement of clinical trials, but one that always seems to be just out of reach. It's something we've written about a few times before. But Joseph Kim, Director of Patient Recruitment and Engagement at Shire Pharmaceuticals, believes the way that patient drug trials need to innovate is beyond just implementing digital health technology.
Kim presented at the HxRefactored conference, put on by Mad*Pow and Health 2.0, in Brooklyn this week. He said his revelation about pharma's message problem on trials came when he learned that the reason most patients participate in clinical trials is not altruism or for the money, but because they're sick and hope the trial will make them better.
"If they’re choosing clinical research because they’re sick, then by definition, clinical research to them is a treatment option," he said. "It’s part of the healthcare menu that they can engage in. …In other words, clinical research is a care option in patients minds, but pharmaceutical companies have not positioned it as such."
To bolster the point, Kim shared data from a Tufts University study which showed that despite spending an average of $1.4 million per study, 90 percent of the time pharma companies miss their timeline on recruitment. Their enroll rates are 15 to 30 percent of what's expected, and retention rates were from 70 to 83 percent.
When it comes to patients, 52 percent of patients said they wanted to hear about clinical research from their doctor, but only 20 percent do. Instead, 46 percent learn about studies online, and 41 percent learn about trials through social media.
“If we think of clinical research as a product or a service offering, then we have a problem with our product development, we don’t understand the buying process patients go through when they’re looking to feel well, we’re terrible at customer engagement, and our 'forms of payment' — in this case in the form of data collection — [are hard to use,]” he said.
Kim petitioned the crowd of developers and designers to come to him with ideas for solving some of these problems, but he also admitted that, in his view, pharmaceutical companies have dropped the ball in significant ways.
One thing pharma can do better is to involve the treating physicians more, rather than just going to clinical investigators, Kim said. He discussed possibly using the electronic medical record as a channel to physicians, setting up alerts that would notify physicians about trials for a certain condition. He also suggested seeking the input of practicing physicians in trial design and recruitment.
Ultimately, for both patients and their doctors, what pharma can do better is to present drug trials as not just a treatment option but also a holistic system whereby patients can help themselves as well as future patients. He compared the process to the Susan G. Komen Foundation's "Race for the Cure."
"If you look on paper, Susan G Komen is one of the most terrible experiences you could ever go through," he said. "You need insurance to participate, you have to spend $70, you have to raise another two or three thousand dollars, and you have to walk for two days and sleep in a tent. Why do people do it? It's because they’ve done a good job of telling the whole story of why you’re doing it. With us, you don’t need insurance, the drugs are free -- it ticks all these positive boxes, and yet you can’t get people to show up. We need to help people understand the story of clinical research."