“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…
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.
This work, “Open Health” is a deriviative of “Open Health: stethoscope” by Maria Boehling for opensource.com, used under CC-BY-2.0.
Last week, our friends at PACE Network USA were kind enough to invite me to write a guest blog for their site about open data initiatives and their potential impact on clinical trials. In the post, we mention OpenFDA as an example of the kinds of open data that could be a boon for health-related app developers and patients alike:
Simply put, open data initiatives like openFDA create new opportunities for collaboration, discovery and insight, and could greatly improve clinical trials by increasing researchers’ ability to learn from earlier studies and real-life occurrences. Projects like the American Society of Clinical Oncology’s CancerLinQ and Project Data Sphere (PDS) have already begun to change how oncologists share information with other oncologists. OpenFDA expands on these initiatives by allowing researchers from private companies and research institutions to easily access the wealth of information stored in the FDA’s archives. For patients, this can potentially accelerate access to lifesaving innovation. (from The FDA on Open Data)
Some developer teams have already taken on the task of developing web applications from the available FDA data. Social Health Insights, for example, created what is believed to be the first app based on OpenFDA data within hours of its release.