Up now at the Wolfram Data Summit is Timothy Vaughan, Research Scientist from PatientsLikeMe – here is the quick overview of his presentation and an overview below:
Drug Efficacy in the Wild
Timothy Vaughan
Research Scientist, PatientsLikeMe
Amyotrophic lateral sclerosis (ALS) is a devastating illness that is uniformly fatal, typically within two to four years. I’ll describe the online collection and analysis of data from ALS patients who experimented with taking lithium carbonate to slow the progression of their disease. In particular, I’ll describe the algorithm we developed to reduce potential bias owing to lack of randomization. Our findings contradicted the results of the research trial that had originally motivated the patients to use this treatment.
Presentation Overview
Timothy stated that he likes to tell stories in a linear sense. He started off by telling the story of PatientsLikeMe, which was started by 3 brothers. One of the brothers was diagnosed with Lou Gehrigs disease and the family became frustrated with finding information and resources. They have even written a book about their experiences.
Tim continued to explain a little more about Lou Gehrig’s disease. My sister would have been interested in the presentation; she is currently in med school hoping to be a neurologist- she rocks. Tim was explaining how Lou Gehrig’s is a neurological disease and how time is of the essence for treatment of the disease. My sister is currently in Med School hoping to be a neurologist. She rocks.
PatientsLikeMe has developed a lot of forums on the site to help people find information. Ways for patients to share and connect to find the best resources. A member profile gives a lot of data about their condition and tracks a data to help improve patient care. For the most part, data is collected through surveys.
Timothy shared a story of a patient who desired to take lithium for his condition. The patient had found a study that showed the lithium slowed the spread of the disease. PatientsLikeMe launched a tool to help track and improve the data from lithium dosage. Many patients shared information and test results, most of the study was initiated by patients and sharing information on the site.
Timothy continued to explain how PatientsLikeMe started to connect people taking lithium and not taking lithium. Tim explained how the goal was to match people in disease course; it was an interesting study they developed. Timothy really got in depth about the study, discussing how the research team managed bias in their study. The discussion was perfect for the audience and an interesting discussion on statistical analysis.
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