Cure Together

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= Open Source Health Research


URL = http://www.curetogether.com/


Description

"CureTogether is a place where patients and researchers work together, doing open research to find cures. Patients can start feeling better today by connecting, sharing resources, and tracking their health. It’s as private as you want it to be, it’s free, and the aggregate data is open so researchers around the world can collaborate on it. Together we can make discoveries and work toward ending suffering for millions of people living with chronic conditions." (http://www.curetogether.com/)

Founder Alexandra Carmichael writes:

"We launched in July as a way to bring patients with 3 chronic conditions together to share their symptoms and treatments with each other and contribute their data to crowdsourced health research. It quickly expanded to 148 conditions, all suggested by members. It’s amazing to me to see people checking off symptoms and treatments they’ve experienced and tried, keeping daily Twitter-like logs of their health, and starting to track basic things like weight, sleep, caloric intake, and exercise." (http://www.kk.org/quantifiedself/2008/12/quantifying-myself.php)


Interview

Matthew Holt interviews Alexandra Carmichael, CEO of CureTogether:

"Me: Which brings us to CureTogether. There are already LOTS of websites and patient communities that are centered around conditions and patient experiences. What's different about yours and why do we need another one?

Alexandra: Great question, thanks for asking! There are definitely a lot of patient communities based on stories and support. But there are very few patient websites based on data. CureTogether is a data-driven site, bringing people with different conditions together to compare symptoms and treatments in a quantitative way.

Me: What does that mean compared to say Daily Strength, PatientsLikeMe or Trusera

Alexandra: I guess that should be "multiple conditions" instead of "different conditions" :) We are more similar to PatientsLikeMe than to Daily Strength and Trusera, which focus more on stories and emotional support (also very important!)

Me: But you're also different in that you're trying to look at cross-condition links, right?

Alexandra: Yes, absolutely. That has been one of the most surprising things we've discovered. By being open to patients sharing data about multiple conditions (33% of our members have more than one condition), we are making some very interesting connections. For example, here's a graph showing the various conditions that have been calculated to be co-morbid with our most active condition, vulvodynia, which opens up new research questions - http://curetogether.com/blog/2009/02/11/vulvodynia-survey-shows-high-comorbidity-rates/

Me: So what is the experience like for someone using the site? What kind of information are they recording and what are they getting back?

Alexandra: When you come to CureTogether, you can search for a condition, or you can sign up and start tracking your health (sleep, weight, calories, and exercise - more measures coming soon). If you choose a condition, you can see symptoms and treatments that other members have entered, check off and rate if you've had them too, share your experience, and see statistics to give you a sense of where you fit in the condition space. Your data is completely private to you, only the aggregate data is made public. This privacy is especially important for the more sensitive conditions that we study, especially in women's health." (http://www.thehealthcareblog.com/the_health_care_blog/2009/02/im-doing-a-first-for-thcb-which-is-a-im-chat-interview-on-the-other-side-of-the-keyboard-so-to-speak-is-alexandra-carmicha.html)


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