A team from Children's Hospital Boston is partnering with a social network devoted to diabetes to explore how sharing personal data can help people manage their disease and give researchers a better sense of how it affects a population in a particular region. TuAnalyze is the name of a feature rolling out today on TuDiabetes, a Facebook-like site where people talk about living with diabetes.
The "Tu" means "your" in Spanish and the English-language site has a companion site in Spanish called EsTuDiabetes. TuDiabetes is aimed at all people touched by the disease while recognizing that Hispanic Americans have a higher rate of diabetes than non-Hispanics, said Manny Hernandez, president of the Diabetes Hands Foundation, which launched the site.
Today marks the start of a "data donation drive." People who join the site are asked to post their hemoglobin A1C values, a measure of how well their blood glucose is controlled. In type 1 diabetes, people have lost the ability to make insulin, which regulates blood sugar. In type 2 their bodies no longer make use of insulin properly. HA1C levels are checked by doctors every three or four months, offering a way to track current health among members who choose to participate.
TuDiabetes has more than 14,000 registered members who can choose to post their number in three ways. They can enter their HA1C number and see it plotted on a graph that only they can see, they can contribute that data anonymously to the site, which will add it to maps of their state and region, or they can also post it publicly on their profile for other site members to see.
The project, funded by a grant from the US Centers for Disease Control and Prevention, hopes to build on information sharing that already exists and use it to learn more about people's experiences and population-level issues than traditional research might allow, Dr. Kenneth Mandl of Children's said in an interview.
"The project is about consumer engagement," he said. "It leverages these emerging technologies around online social networking and specifically looks at the communities that are arising organically."
The Children's researchers chose TuDiabetes for its privacy protection, the non-profit status of the foundation that runs it, and its lack of commercial involvement, Mandl said. Sharing data is similar to the mission of PatientsLikeMe, a site founded by MIT engineers who had personal experience with ALS (Lou Gehrig's disease) and wanted to spur research while sharing disease management strategies. The diseases on that site tend to be rarer than diabetes and the site has relationships with pharmaceutical companies, Hernandez said, both of which make it different from TuDiabetes.
The CDC conducts large surveillance surveys to track health, but social networks offer methods that are cheaper, nimbler, more locally nuanced, and better at keeping in touch, Elissa Weitzman of the Children's informatics program said.
Four out of 10 TuDiabetes members were already sharing their HA1C numbers, Mandl said.
"It appears [they may be] replacing conversations that might be happening between doctors and patients but for which there is no time in the health system," he said. "Diabetes requires a lot of management, a lot of discussion [about] medication, equipment, the complications, their diet, their lifestyle and exercise. These communities are helping each other with these issues ... and creating this parallel support and information structure to the formal clinical information infrastructure."
Children's researchers put health informatics on the map when they tracked pandemic swine flu around the world with an online tool called HealthMap that registered not just official reports from government health agencies but blogs, chat rooms, news reports, and other unofficial sources of information that sometimes bubbled up first.
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