Social media networks focused on health conditions are now test sites for clinical research. Physicians at Harvard Medical School, the Harvard-MIT Division of Health Sciences and Technology and Children's Hospital of Boston embarked on a study to assess whether registered users of TuDiabetes, a social network for individuals with diabetes, would willingly share personal data to contribute to a public health study on glycemic control. In short: YES. Of the 6500 active members of the site (at the time the study was conducted in May 2010), 17% voluntarily entered their A1c values into a program designed for the study called TuAnalyze. Within the participating population, 81% opted to share that data for inclusion in charts, graphs and maps on the site. Over one-third also listed their personal A1c data on their profile page.
The authors tested this "low-cost and scalable model of citizen science" and concluded that the results were compelling. "The TuAnalyze model, which provides for patient reporting and aggregate feedback on a flexible time schedule could provide a boon to public health and research and complement these other approaches." The full article is called Sharing Data for Public Health Research by Members of International Online Diabetes Social Network can be found on PLoS ONE.
It's not surprising to me that people who are interested enough to join a social network (outside Facebook) that focuses solely on their condition would contribute to a study that advances care. What puzzles me is why more researchers are not taking advantage of this population.