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article imageCureTogether, a platform for open-source health research

By Bob Ewing     Mar 3, 2009 in Health
CureTogether helps people to anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.
I have Type 2 Diabetes and am always seeking information about how to best control and maintain my health. I was directed to a site, which helps people to anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.
CureTogether was launched by Alexandra Carmichael and Daniel Reda in July 2008 to help the people they knew and the millions they didn’t who live in daily chronic pain.
The social network like site started with 3 conditions and quickly expanded as people wrote in to request that their conditions be added to this ongoing study. CureTogether is currently funded by its founders, and does not host or receive funding from advertising.
CureTogether uses crowdsourcing to develop the information that is shared.Crowdsourcing is the act of taking a task traditionally performed by an employee or contractor, and outsourcing it to an undefined, generally large group of people or community in the form of an open call.
In the case of, the people who have the condition do the work as compared to a group of health professionals collecting and disseminating the information.
After spending considerable time on the site I emerged with two questions which I emailed to Alexandra Carmichael and which were answered by Daniel Reda.
BE: People who have a serious, potentially life threatening disease, may be desperately seeking a cure or at least relief, this can make them vulnerable to quack cures.
How do you sift the facts from the sales pitches?
DR: Yes, people with serious, life-threatening diseases are vulnerable to quack cures, and virtually all sources of health information are potentially subject to varying degrees of manipulation or distortion. While we cannot yet report on any specific solution to this difficult problem, we acknowledge the challenge and are working hard towards an acceptable solution. It will probably involve some combination of verifying new members' identities while also letting the community police itself.
BE: I have read a few studies about the use of cinnamon and control of blood glucose. People may experience an improvement in their blood glucose for a number of reasons; they may have had a solid breakfast of oatmeal and blueberries, done stretching exercise and gone for a walk.
They may also have taken cinnamon supplements or added to the oatmeal. They take a reading when they return from the walk and notice an improvement from the day before, if the cinnamon was new to their routine, they may attribute the improvement to that and record the result. However, it may be something else.
How are people's reports of their treatment efforts verified?
DR: The first phase of CureTogether is to build a community and collect data as a means of listening to people with these conditions. It's not very scientific yet, but can still be helpful, at least to show people what the space of possibilities looks like and perhaps how they compare with others. The next phase, which we're working on, is to put structures in place so that we can determine things in a more objective way.
One way we're doing this is by introducing tools to let people track their health, diet, sleep, and other measures. Eventually this will make it possible for CureTogether to evolve from asking people's opinion of whether they think cinnamon helped their blood sugar, to measuring everything they eat, everything they do, and regular blood sugar readings, and inferring statistically, from the data of many people, whether cinnamon makes a difference.
We will need a lot of data and statistical horsepower to do this reliably, but the result will be more definitive answers, independent of people's opinions of whether a particular treatment is effective or not.
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