Discussions with Patient Empowerment Changemakers: CureTogether
by ANDRE on FEBRUARY 22, 2011
Last July, the Ashoka Changemakers organization launched a competition around patient empowerment that spanned the globe. I wrote about it last year on the blog with some added thoughts on the e-patient revolution. Since then, the competition closed out and announced three winners of the $10,000 prize in December.
I decided it would be a great idea to interview the winners of the prize and give you all some additional insight into what they are doing and how they came about. These are the people who are thinking outside the box and putting their ideas to work to impact the health of their communities.
My first interview of the winners comes from good friend Alexandra Carmichael and CureTogether. I first met Alex a few years ago at the Health 2.0 conference and was thoroughly impressed and intrigued with what she had been doing around patients empowerment. Needless to say, I was also pretty happy that she was won of the winners.
Pulse/Signal: Give us a brief overview of CureTogether (e.g. how it came together, it’s current purpose) and tell us why patient empowerment is so important to you?
CureTogether started in 2008 after I had struggled with a decade of chronic pain. It was so hard for me to find information that I wanted to share what I had learned with other patients in a structured, quantitative way. So my partner Daniel Reda built CureTogether, starting with 3 conditions, and it started spreading by word of mouth – today we have over 500 condition communities, all added by patients themselves. Empowering patients is so important to me because so much needless suffering can be avoided if patients are able to share what they know and have multiple sources of information to make good health decisions.
The purpose, or problems we’re trying to solve at CureTogether are:
1. Under-funded Diseases. The most popular conditions at CureTogether are chronic diseases, mostly affecting women, that are poorly understood and inadequately funded by research granting agencies. Our top conditions include depression, migraine, vulvodynia, and chronic fatigue syndrome. CureTogether helps people share their experiences and eventually do their own research into these conditions, amplifying research efforts to find successful treatments.
2. Embarrassed Isolation. For acute, terminal conditions, patients are supported and more likely to be open about their conditions. For chronic, sensitive, and rare diseases, there is more of a stigma associated with them, so patients suffer in silence. CureTogether provides an anonymous place to connect, and we often hear “I thought I was the only one with these symptoms!”
3. Unverified Anecdotes. Patients often have to rely on low-quality information around them — on the web and in under-served medical communities. We hope to bring some rigor to anecdote.
Pulse/Signal: Can you give us some examples about how you know it’s been a value add to the community? Any success stories of impact?
When we get wonderful quotes like the following, I feel like we are definitely adding value to the community. Now the challenge will be to reach as many people as possible.
“CureTogether seriously changed my life.” — Christopher
“This site is really a fantastic idea!! Absolutely magnificent!” — Mayke
“Crowdsourcing health knowledge to find cures – Terrific!” — David
“I just wish doctors got this information and applied it…” — Amanda
“I thought I was the only one with these kinds of symptoms.” — Faren
“Your website is helpful beyond words… I feel connected to people who are suffering from the same symptoms as myself. You have made me feel empowered…” — Pam
Pulse/Signal: How will the Ashoka prize and recognition help you advance your work?
The Ashoka prize is a great honor that will bring added credibility and exposure to CureTogether, which will help us to spread the word to more people who can be helped by the data we’re gathering and the discoveries we’re making. Two recent examples of the kinds of discoveries we are making as more people join are the recent discovery of a migraine biomarker that predicts a negative reaction to the drug Imitrex (http://curetogether.com/blog/2011/01/11/migraine-symptom-predicts-response-to-imitrex/), and a chart of popular vs. effective treatments for Chronic Fatigue Syndrome (http://curetogether.com/blog/2011/02/03/surprising-new-data-what-really-helps-patients-with-chronic-fatigue-syndrome/).
Pulse/Signal: I firmly believe that the spotlight is on people such as yourself, entrepreneurs/changemakers, to make a difference in the health of communities. What are your thoughts on competitions like this to gather together and reward new ideas, specifically in health?
I think competitions are a great way to gather and highlight ideas that have yet to be broadly discovered, but that can have a massive impact. With health in particular, competitions can encourage more people to create solutions for the public good, instead of focusing only on financial gain.
Pulse/Signal: How do you see CureTogether improving patient empowerment in the next 5 years?
In 5 years, CureTogether will have many more research partnerships and be translated into multiple languages, so anyone with a cell phone will be able to access this patient-driven health information in their own language. If there is no physical medical facility nearby, the online health world can help ease the burden of suffering. Also, with the level of data we will have in 5 years, we will be able to publish discoveries daily with statistical power that is on par with traditional forms of research. So patients will really start to benefit from the investment of their information.
Thanks so much Alex for the opportunity to dive a bit deeper into your mission. For those of you interested in Alexandra’s work in the QuantifiedSelf movement (see recent blog post on behavior change support), she is putting together a fabulous conference in the next few months that you may want to check out.