Now, a study published last month in PLoS ONE has mined the information stored in a diabetes social media site for public health research. The site is TuDiabetes.org, which my friend Manny Hernandez founded four years ago as a non-profit organization.
Any TuDiabetes community member can join TuAnalyze, an application of the site that allows those touched by diabetes to track, share, and compare their health information.
One of the TuDiabetes goals has been to help advance diabetes care and the public health response. The new PloS ONE study by researchers at Children’s Hospital Boston has begun to use the information gathered in TuAnalyze.
They invited members to participate in a “data donation drive,” sharing data about their A1C levels. Members could share their information either publicly or anonymously, as they preferred. In any case, the researchers aggregated all of it and displayed it on state- or country-level maps.
When the researchers began the project, TuDiabetes had 14,678 members. People in the U.S., of course, comprised the great majority of participants, 77 percent. But Canadians accounted for 6 percent, people from the U.K. 4 percent, and from Australia 1 percent. People from many other countries accounted for 12 percent. Members have to be at least 18, unless they join with a parent or guardian.
Most members themselves have diabetes, although about 15 percent are significant others or friends of persons with diabetes. TuDiabetes.org has news articles, blogs, and discussion forums. The site lets members create an online profile to interact with other members.
The average A1C level of those who provided their data to the researchers was 6.9 percent. I know that this is significantly lower than that of most people with diabetes.
These TuDiabetes members are helping themselves. And by doing so they are also helping the whole diabetes community.