When Larry Smarr started exploring the biochemistry of his body, he turned to his microbiome to find answers. At TEDMED 2013, Smarr talked about the steps he took in the months before he discovered he had Crohn’s disease.
At first, Smarr used apps like Zeo and Fitbit to monitor his sleeping and exercise respectively. Eventually, Smarr delved deeper, turning his attention to blood work and stool analysis. Studying his stool provided Smarr with rich data about his microbiome, the ecosystem inside the human body made up of different organisms such as bacteria.
Graphing his results, he saw a large jump in lactofferin, a protein tested to check for Inflammatory Bowel Disease. Smarr never felt sick, especially not sick enough to have a chronic disease, and yet that’s what the data showed.
“[There’s] this fallacy that you can guess what’s going on inside of you instead of measuring it,” Smarr said.
His experience with self-diagnosis left him with some insight into how technology might assist patients in actively seeking solutions to their medical problems.
“What this allows us to do, if we start thinking about this tracking over time, that’s going to be a very different form of medicine than we’re used to,” Smarr said.
Jessica Richman, cofounder of uBiome, has begun heading down that road already. Her crowdfunding campaign to collect citizen-sourced biome data raised over $350,000 from 40 different countries, according to her press release. Participants paid $80 and sent in a stool sample to have their own microbiome data sequenced. Richman, who also spoke at TEDMED, vouched for uBiome’s business model to spur a new form of scientific research — that of the citizen scientist.
Encouraging scientists to “think outside the current system,” Richman expects her project to democratize research, creating an “open system, so anyone can participate.”
Smarr and Richman agree that the biological data gleaned from the microbiome can help with the exploration of a variety of conditions, including Crohn’s, eczema, autism, and anxiety. The more data Richman receives, the better results and information she can provide those that provided data.
“People are desperately sick and have chronic conditions and there’s no money to fund their research,” Richman said. “We’re all dying waiting for studies to be funded.”
It’s yet to be determined whether uBiome will be an example of a new model for crowdsourced research, but both Richman and Smarr see significant potential in shifting the paradigm. Similar to Smarr’s experience with his microbiome, uBiome offers citizens the opportunity to send in samples of their stool for testing. The success of the uBiome project in terms of what citizens can learn is contingent on how many people decide to participate, according to Richman.
Smarr credits self-tracking technologies for his own discoveries about himself, and believes new technologies will only help more.
“Because of the big data and because of the ability to analyze it, we’ve got hope,” he said.