Research Trove: Patients’ Online Data

NYTimes piece
"After Amy Farber learned she had the rare and fatal disease called LAM in 2005, she became determined to increase and speed up research into her illness with the hope of finding a cure in her lifetime.
Dr. Farber, now 39, was a law student with a doctorate in anthropology who was about to start a family. She quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.
To her dismay, she says, she encountered a cumbersome research system fraught with obstacles to collaboration and progress — one that failed to focus on patient needs... That led her to Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory, and a new collaboration between her group and the Media Lab: LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.."