Between the Lines
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This poignant uncertainty draws immediate worry and comment from other posters, who describe at length their own histories with dizziness. They tell denlock to talk with her doctor, which she agrees to do. One patient picks up on her use of prednisone, which denlock had assumed was irrelevant, but in this poster’s case had caused her blood sugar to fall dangerously. “I will also make a note of this and bring to the doctor’s attention,” writes denlock. “Maybe I just need a full workup of bloodwork to make sure everything is ok.” The discussion continues.
Mining that kind of back-and-forth for medical insights wasn’t part of the purpose when Brian Loew and two colleagues founded Inspire in 2005. Rather, the site’s business plan was based on helping people find and participate in clinical trials. Human studies face chronic shortages of participants; meanwhile, many desperately ill patients would gladly participate if only they had the opportunity. Inspire works with dozens of disease research groups, such as the Lung Cancer Alliance and the National Osteoporosis Foundation, whose disease-specific groups form part of the site. It also receives funding from four pharmaceutical companies that pay a flat fee for Inspire to recruit from its 125,000 members. Members learn of trials through alerts targeted to their condition, treatment, age, gender and geographical proximity to test sites. One Inspire-organized lung cancer trial has already been completed; another, for an arthritis drug, is under way.
The idea of probing Inspire members’ conversations came later, with help from Simetric, a marketing company that specializes in social media analysis. Inspire and Simetric took an approach called natural language processing, in which a computer program scans informal conversation for key words and their context. As long as a sentence contains some sort of sentiment, the software will notice; it figures out whether the author’s feelings were positive or negative, and it links those feelings to a treatment or symptom under discussion.
A query for mentions of the multiple sclerosis drug Avonex, for example, would parse a post by one user who writes, “i felt worse on avonex than my ms made me feel. while on avonex my psoriasis got VERY VERY bad/worse.” Another post reads, “I have been losing my hair…. I am going to switch from AVONEX to COPAXONE…to see if it is the AVONEX that is causing my hair issues.” After the program sorts through the text, Simetric employees review the results, double-checking the computer’s interpretations and dealing with tricky cases. The software may, for example, have trouble with the apparent contradiction of “wicked good” or pass over phrases it hasn’t been programmed to recognize.
A potentially significant use of software-driven analysis would be to study the effect of cancer drugs on quality of life. “One thing women with metastatic breast cancer discuss is the notion that quality of life is not a significant enough part of treatment,” says Loew. “Doctors talk about extending life by so many months, but they don’t talk about what life will be like during those months.”
