We’re privileged to be working with Rahlyn Gossen, founder of Rebar Interactive, a digital strategy consultancy serving the clinical research industry. Rebar Interactive creates empowering (and award-winning) digital experiences for patients and professionals. Rahlyn’s digital marketing expertise spans a variety of areas, including search, social media, and mobile. Her work is infused with a patient-centric perspective, honed during Rahlyn’s time as a clinical research coordinator.
Rahlyn publishes a widely-read clinical trial blog and newsletter focusing on digital strategy, the patient experience, and innovation. The same topics are explored in 140 characters or less on Rebar Interactive’s Twitter account. Rahlyn also serves on the editorial advisory board of Applied Clinical Trials. Rahlyn is a proud New Orleanian and a connoisseur of cute online animal videos, particularly those of the feline variety.
Tell me a little bit about yourself, and the path you’ve been on to make clinical research better.
The LVJJstudy.com website is a pilot project to improve how we inform patients about clinical trials.
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
I Love Internet :: Social Media Week Milano :: Il Festival della rete by Bruno Cordioli is licensed under CC by 2.0
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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Did you know that in 2013 approximately 382 million people worldwide were living with diabetes? Prevalence is third highest in the U.S., where 22.1 million people were living with diabetes in 2011. That’s an increase of 39.5 percent since 2004. Though diabetes is common and rising in prevalence, individual awareness is low, both internationally and in the U.S. Awareness is key to preventing and managing diabetes. Internationally, 46 percent of diabetes cases are undiagnosed. In the U.S., one in four diabetics do not know they have diabetes. And only one in 10 of the 86 million pre-diabetic U.S. adults know about their condition. Without weight loss and moderate physical activity, 15 to 30 percent of those with pre-diabetes will develop Type 2 diabetes within five years. Once people become diabetic, they are at higher risk of serious health complications and their medical expenses become twice as high. More…