In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.
According to the Union for International Cancer Control (UICC), 8.2 million people die from cancer worldwide each year. And that number is set to rise. To address the cancer epidemic, the UICC organizes World Cancer Day on February 4 of each year. The day was created “to raise awareness about the disease and to develop practical strategies to address the cancer burden.”
The 2015 World Cancer Day tagline is “Not Beyond Us,” which is intended to highlight that solutions to cancer care are within reach. Four key areas of focus support this theme. For each of the four areas, UICC defines targets to achieve by the year 2025 and the challenge to achieving these targets. UICC also describes how we can overcome the challenge to meeting their targets for each focus area. Learn more about each of the focus areas here:
Click to view U.S map illustrating cancer incidence and locations of enrolling cancer clinical trials.
Click the image to view an infographic about the Lilly COI API
Click to enlarge the infographic.
As the Internet continues to mature and more people access the web through desktop and mobile apps, the need for APIs (Application Programming Interfaces) has never been more pressing. APIs provide a consistent, easy-to-use way for developers to access data that can be built into mobile apps or websites.
Since 2005, ProgrammableWeb has cataloged the world’s APIs and has become the de facto journal of the API economy. Today there are more than 12,000 APIs listed in the ProgrammableWeb directory, but only 2.07% of those APIs are health-related. Clinical research-related APIs are hardly present at all, accounting for just 0.07% of the APIs listed on ProgrammableWeb.
The Lilly COI API is at the center of our efforts to make it easier for people to find clinical trials that are right for them or their loved ones. The API was created to make publicly-available clinical trial information easier for people to understand and easier for developers to work with.
“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.