Crowdsourcing to Cure Diseases
A crowdsourcing initiative that is throwing a new lifeline to patients and helping to speed up the discovery of treatments and cures.
Cure Together, United States
Most good doctors will freely admit that they don’t everything about a patient's condition which is why patients are advised to make accurate notes about their symptoms to help the medical professionals give them the best treatment. Crowdsourcing and open innovation is taking this kind of patient knowledge a big step further by making it available to the whole world.
Cure Together (www.curetogether.com) is a web-based resource where individuals from anywhere on the planet with internet access share information about hundreds of medical conditions. Such a vast body of original material about diseases, conditions and illnesses could help to speed up the rate at which medical discoveries are made.
Chronic Pain Relief
The website was in launched in 2008 by Daniel Reda, a bio-IT entrepreneur and Alexandra Carmichael, a research affiliate at the Institute of the Future.
Alexandra had lived with chronic pain for a number of years and went from health specialist to health specialist trying to find some kind of relief for her condition. Nothing worked until after 10 years she discovered hormone replacement therapy. Frustrated that it took so long, and that she could never find enough information online she came up with the idea for the website.
Cure Together aims to be a valuable resource for people who live in chronic pain, especially those people who may be embarrassed about their illness and unable to confide in anyone about it. The original starting number of 3 conditions quickly expanded as more people wrote in asking for their conditions to be added. Cure Together has also partnered with universities and research organizations to help make new discoveries and connections faster.
Privacy Could be a Health Risk
The power of the crowd is edging toward the forefront of medical science and though some people may balk at the idea of sharing such personal information online there are others who believe that privacy might be bad for your health in the long term. And that is because when information is shared collective wisdom can lead to deeper understanding. Cure Together keeps individual information private, but the anonymous aggregated data is shared openly.
The internet is full of vast amounts of data and anecdotal information about every medical condition under the sun, but what Cure Together is offering is structured, quantitative information.
Cure Together has a truly global reach. To date it has 15,000 members in 112 countries, who have contributed 1.3 million data points across 625 conditions. And those numbers are expanding all the time. It has partnered with Carnegie Mellon, Drexel, Stanford and Emory Universities as well as the University of Electro-communications in Japan. There are numerous studies in progress and the website is always on the lookout for more that its data supply can help with.
The most popular conditions are chronic diseases that affect women. Many of these are poorly understood and have been under resourced. But the more people share their experiences the more they are motivated to carry out research into their conditions which contributes to an expanding body of knowledge that can catalyze efforts to find treatments and cures.
This unique crowdsourcing initiative is also gaining widespread recognition amongst the clinical trial community, especially those pharmaceutical companies and research organizations that are looking to recruit patients and want to change the way they conduct clinical trials.
This data driven crowdsourcing platform is an incredible resource that not only gives comfort to patients and helps them to make better decisions about their health, but it’s also a valuable resource that is giving researchers deeper insights into diseases.
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