At Lilly COI we spend plenty of time exploring the future of clinical trials. We continue to explore clinical trial matching, Internet-based studies, mobile health in trials, and other possibilities. Though we are excited by these possibilities, we also know that it will take some time for possibilities to fully morph into practicalities. Technologies need to improve, regulatory questions need to be answered, and clinical trial models need to evolve. Meanwhile, patients are in great need of an improved clinical trial experience today. We can’t ask patients to wait on a convergence of ideal conditions, especially when there are feasible improvements that we can make now.
“Nobody really cares about me, I’m not Beyonce.”
This quote was attributed to Deborah Peel, founder of Patient Privacy Rights, in a Bloomberg article about data mining of online patient conversations. Peel’s point is that though people generally understand the public nature of their online conversations, they may not realize the extent to which their conversations are being monitored, packaged for consumption, and sold. As data-enabled Internet business models continue to emerge, so too will new questions, ethical and otherwise.
Evolving Business Models
Treato, which is the focus of the Bloomberg article, is a big data company evolving one of these new business models. The company’s software scrapes tens of thousands of online patient discussions daily, aggregates that data, and then analyzes it for customers. The final product is insight into trends about how drugs are used and what problems consumers experience with them. Until recently, Treato’s customers were primarily healthcare and especially pharma. One pharma client, for example, uses Treato to understand the patient journey, particularly patient concerns as they move from diagnosis to treatment.
Now Treato is pursuing a new customer: Wall Street. Treato sends fund managers regular reports summarizing online chatter about drug side effects or prescribing trends. Wall Street interest in this area is certainly not new. Treato’s predecessors built businesses by putting investors in touch with health professionals and researchers. But the data-enabled Internet-centric approach to gathering this insight is relatively new. By using software to pluck data directly from patient conversations, Treato has access to both more and different data than has been previously available.
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Earlier this month, we ran across this tweet from Stephanie Fischer (@SDFatPhRMA):
Though the comment may be referring mostly to prohibitive eligibility criteria found in some trial designs, there are many additional factors that make trials “hard to get into,” according to feedback from patients. Inconvenient locations, overly-demanding reporting requirements, and too-frequent lab test appointments are just are few. As technologies that allow data collection and at-home lab tests improve and become more widespread, the rise of online clinical trials may provide more opportunities for researchers to conduct more inclusive studies, and to help patients overcome some of these common barriers to participation.