Autoimmune Citizen Science is an app to help people with autoimmune diseases track their symptoms, lab tests, and treatments in order to see what’s working and what isn’t. Individual data is aggregated in order to see what’s working for the community as a whole. Check out the project on SciStarter and sign up for the beta testing phase of the app.
by Vivek Mandan
Despite the estimated 50 million Americans with at least one or more autoimmune diseases, public awareness is practically nonexistent. How could this be? 50 million individuals out of a national population of 320 million is almost 16%. With almost one-sixth of the nation suffering, autoimmune disease is present at epidemic proportions – yet, medical treatment remains limited and research scarce and disorganized. How did this happen silently and unnoticed when we have the most advanced medical knowledge in the history of the world?
Autoimmunity and Medical Specialization
The medical system is segmented into specialties. If someone has a hormonal issue, they go to an endocrinologist; kidneys, a nephrologist; digestion, a gastroenterologist. There are immense benefits to specialization – with a system as complex as the human body, it is impossible to make any progress without systematic specialization.
However, autoimmune diseases were only recognized as a class of disease around 60 years ago in 1957, long after the creation of medical specialties. Since autoimmune diseases tend to affect multiple biological systems and have a shared etiology, dividing autoimmune diseases by the primary physiological location in which the worst symptoms manifest is both inefficient and inaccurate with regards to treatment and research.
This mismatch between specialized providers and multifaceted diseases becomes clearer as we examine the numbers surrounding research and treatment. Currently, autoimmune disease related healthcare expenses come to over $100 billion per year, while cancer costs come to $57 billion. However, research funding for autoimmune diseases are a paltry $850 million, compared to the $5.4 billion for cancer. Why is the funding for cancer over 6 times that of autoimmune diseases, while the healthcare expense of autoimmune diseases is nearly double that of cancer?
Cancers have been grouped together as a class of disease when it comes to research and treatment. While individual treatments vary, investigating the common factors between various cancers has led to tremendous progress in understanding the mechanisms behind them. It’s time to do the same for autoimmune diseases. Autoimmune disease research is fragmented – Hashimoto’s is researched as a thyroid disease, psoriasis as a skin disorder, rheumatoid arthritis as a joint disease. In order to understand autoimmune diseases, the first step is to group them together.
Lab tests and the patient experience
The other major challenge in autoimmune disease research is the lack of comprehensive patient information. People with autoimmune diseases tend to have many symptoms that aren’t alleviated by standard medical treatment. As a result, many individuals start doing research on their own to see if diet, lifestyle changes, supplements, and more can make a positive impact on their quality of life.
The disconnect occurs because researchers and healthcare providers are unable to effectively access a scientific, well organized form of individual information. There is currently no lab test or combination of tests that can account for the myriad symptoms and treatments that patients experience throughout their time outside of the doctor’s office. The problem is somewhat cyclical – research is stifled by inefficient organization of disease information and patients can’t centralize their information without new research technology that addresses the entirety of their condition. How can we make progress?
Like a Pedometer for the 21st Century
With the AICS app, patients will be able to track everything they’re trying and study how it affects their symptoms and lab tests in detail. While they focus on tracking their daily progress, we’ll be aggregating the data across everyone who uses the app (anonymously and privately) giving them immediate access to real statistics based on real data. This app helps citizen scientists manage their autoimmune diseases right away, while applying the data they provide to make progress for the entire autoimmune community.
Citizen science can play a key role in finding cures to autoimmune diseases. Through seeing what people with autoimmune diseases are going through and trying on a daily basis, we take the first step toward understanding how to solve the mystery behind these illnesses. The AICS app is currently under development and our first beta release happened on May 22nd. Want to be a beta user? Sign up here. We hope to see you join us as a citizen scientist today.
Vivek Mandan is a software engineer by trade and helped design the Autoimmune Citizen Science app. He was diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease at the age of 12. He understands what people with chronic illnesses go through on a daily basis and strongly believes in the power of tracking software and big data to help people with chronic illnesses on their journey to health.