I’ve written a number of times about the growing value big data is playing in the advancement of medical research. Most of the time, these discussions tend to revolve around high-tech projects, such as the 100,000 genomes venture that hopes to significantly advance the genomic data we have available to us.
Of course, the amount of data we can gather via our mobile devices, and the role that data can play in providing a holistic insight into our life renders the clear possibility of citizens playing a significant role in scientific research in the coming years.
A good example of the possibilities comes via a citizen science project that aims to improve our ability to tackle autoimmune disorders, which are believed to affect some 50 million Americans.
Health data
The Autoimmune Citizen Science project aims to help overcome some of the problems inherent in a condition with around 80 recognized forms. Despite the widespread nature of the condition, successful treatment is difficult. The idea behind recruiting citizen scientists to help came from a very personal experience.
“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,” the founder says.
“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.”
Citizen science
The Autoimmune Citizen Science app was created to help. It allows patients to track their symptoms, treatments, lab tests and various other things. The hope is that by visualizing their health, and sharing their data, the system will be able to spot patterns and correlations to help individuals make better sense of their own health.
The anonymized and aggregated data will shed some light on what is working for others. For instance, if a user is interested in a specific treatment, they can explore the feedback from other users before making a decision. It places autoimmune disease inside a much bigger picture.
“[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” the team say.
The developers reveal that the app has received considerable attention from the research community who are excited about the potential of it to shed much needed light onto chronic illness. There is considerable potential for such approaches not just to help individuals, but also the doctors and researchers that are helping to treat the diseases.
