Nearly 50 million Americans live with one or more of 80 recognized autoimmune disorders, conditions in which the body’s immune system attacks healthy cells or tissues. Though widespread, the search for treatments for these conditions can be convoluted and frustrating.
Autoimmune Citizen Science founder Vivek Mandan experienced this frustration first-hand as he struggled to deal with his own autoimmune disorder.
“I spent a lot of time translating my health into data, conducting experiments on myself, combing through forums for ideas, Facebook discussion groups, blogs, and scrolling through the hundreds of articles I reflex-bookmarked trying to figure out whichever obscure theory I was experimenting with,” he said.
“I knew there had to be a tool that could help me understand my health and unified resources for combatting autoimmunity. In fact, there wasn’t, so I decided to make one.”
So he created Autoimmune Citizen Science (AICS, an app through which patients can track their symptoms, treatments, lab tests, and more).
“By visualizing their health and investigating patterns/correlations that our system identifies among their metrics, they’ll be able to make better sense of their health – what’s working, what’s related, what’s not, etc. We want to translate their everyday experience into a tangible resource they can work with” says Mandan.
Furthermore, everyone using the app can learn from what worked or didn’t work for others through anonymized and aggregated data. For example, “if they’re curious about a supplement or treatment, they can look at data from similar individuals to guide their decisions.” The feedback from initial users showed “that this [app] is clearly something the community wants, and whether it’s AICS or not, change is coming”.
Citizen science and crowdsourced data for managing autoimmune disease and chronic illness provides a crucial big picture look. “[Since] the symptoms appear across multiple systems fluctuating day by day, we need a way to zoom OUT and see the whole picture. Because it’s not something you can fix in a day or a week, it must also be observed over longer periods, and citizen science is crucial in seeing a truly big picture” says Mandan.
Healthcare practitioners are also excited about the possibilities of the AICS technology into their understanding of chronic illness. Mandan explains that “because the chronic illness experience has so many qualitative aspects, there’s much demand for a system that can translate them into quantitative data.”
Contributing your health information to AICS can help you and others with autoimmune disease, but also doctors and researchers treating the diverse diseases.
Although struggling with an autoimmune disease is hard, Mandan sees hope everyday as people overcome their autoimmune disease through community work, crowdsourced data, and citizen science. “Our pursuit for knowledge as a community is a key part of helping people to find what works for them. It will help millions of people find the right answer faster and more efficiently.”
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