What was the defining moment that led you to this innovation?
I've lived in and around chronic pain for my whole life. My mom has suffered with intense migraines for the past 30 years, so I grew up with her in bed for days at a time. I live with vulvodynia (chronic vulvar pain), migraine, depression, and a chronic multiple tic disorder. 5 years ago I finally solved my vulvodynia, after a 10 year odyssey of pain where on some days I couldn't even walk or sit (forget about wearing jeans or riding a bicycle or the knife-like feeling of sex).
It was an extremely embarrassing condition, and I didn't know anyone who had it that I could talk to or compare notes with. Doctor after doctor told me they couldn't find anything wrong. I felt very afraid and alone, and eventually dove into all the research papers available on PubMed to figure out what I might have and how I could ask a doctor to diagnose it and treat me. When I did find a solution, I wanted to share everything I had learned with other women who were going through the same thing, since I learned that vulvodynia affects 1 in 6 women at some point in their life. Also, as a scientist, I wanted it to be quantitative - how many people felt better on this treatment vs. that one? The disease forums were good for general support, but I wanted evidence-based answers.
So we put up CureTogether as an experiment, with 3 conditions - vulvodynia, migraine, and endometriosis (which a friend of mine had). I added the symptoms I had, treatments I had tried, and shared what worked best for me. Very quickly we had requests flooding in for people to be able to add their conditions to the site, so we opened it up and it started to grow. I was surprised to learn that hundreds of medical conditions existed!
Now I know 923 people with vulvodynia on CureTogether and what their collective experience with the condition is like. My mom has 1180 people with migraine to share ideas with, and has tried some new lifestyle changes based on things people suggested at CureTogether. We're not alone anymore, and if enough of us come together, we can make some real inroads into the conditions we live with every day. For me, every day I'm not in pain is a day that I can help other people who are.
Tell us about the social innovator behind this idea.
Alexandra Carmichael is co-founder of CureTogether, a social health collaborative that brings patients with hundreds of conditions together in overlapping data communities. Alexandra has spent 15 years bridging gaps between life science research, internet technologies, chronic pain, design, and business. She previously co-founded bioinformatics software company Redasoft with Daniel Reda and helped to design the first social web application for bioinformatics.
She is currently a Research Affiliate at Institute for the Future, helping to forecast the next decade of health and healthcare. She is also creator of the BodyShock The Future contest for global health and Director of The Quantified Self, a global forum for people who quantify themselves to gather data and learn from each other. She advises a number of startups, and is a prolific Tweeter on topics of health and chronic conditions @accarmichael. Alexandra lives with a handful of chronic conditions herself, and is dedicated to changing the way health decisions are made, using the power of the crowd. She also has a personal goal of helping 10 people every day.
Daniel Reda is co-founder of CureTogether, with 15 years of experience as a social bio-IT entrepreneur. He co-founded Redasoft in 1997 with Alexandra Carmichael to help life scientists visualize complex genetic information and design molecular biology experiments in a simple, visual way, with applications ranging from cancer and AIDS research to potato crop research. Redasoft’s software has been licensed by more than 450 research organizations in 37 countries and was acquired by Hitachi Software in 2006. Daniel also designed the first social web application for bioinformatics.
A former molecular biologist and self-taught programmer, he was named a “Bio-IT Champion” by Bio-IT World and was nominated for MIT Technology Review’s Top 35 under 35 award. Daniel was also the inaugural Chair of the Biotechnology & Bioinformatics track at Singularity University at NASA Ames, co-founded by Peter Diamandis and Ray Kurzweil. His expertise in writing code is matched by his passion for eliminating waste and reducing suffering in the world.
How did you first hear about Changemakers?
If through another, please provide the name of the organization or company